Adrenal gland cancer

2

Comments

  • mtino
    mtino Member Posts: 1
    #22
    kmonteith said:

    oops...should have said stage III or IV.

    To kmonteith
    You may have found your answers, but I thought I would try and help. My grandfater, who will just be turning 70 was recently diagnosed with adrenal gland cancer-stage 4. Here is the intersting thing about this type of cancer-it is difficult to detect and is usually found after it has hit stages III or IV, 1 out of 1 million people develop this type of cancer and once it is at one of these stages, surgery is out of the question and it is "maintained" by chemotherapy. Doctors are positive-they usually are. My grandfather is doing very well. There isn't much else dr's can do especially at stage IV. But as I said, it can be "maintained" or even reduced by doing the chemo.
  • 4casey
    4casey Member Posts: 5
    #23
    Kaymb said:

    I myself have adrenal
    I myself have adrenal cancer, and had a 8cm tumour taken out in march 08! my cancer has now spread to my lung and bowel and still the only treatment that my specialist has told me is the mitotane!! they may try to use radiotherapy or chemo but because the cancer is so rare, in many cases the therapy has not been able to treat the cancer!! so i have been given a yr or so to live, and are now praying that the mitotane works miracles for me!! but best of luck to you!!! be strong

    new drug clinical study
    There is a new drug and a clinical trial I just fuund, go to http://www.tgen.org/index.cfm
  • 4casey
    4casey Member Posts: 5
    #24
    sandeeb said:

    adrenal cancer
    Hi, I have had adrenal cancer two times and I will start on mitotane,drug of choice for this cancer, next week. My first bout was in 2002 and I was clear for 6 years with no treatments.
    Stage 2. The cancer came back last year and I had surgery again in January of this year. I am going to M D Anderson for treatment. If you write to a guy named **** Beverlin:
    beverlin@ix.netcom.com and ask him to let you join an (adrenal cortical carcinoma)yahoo group he will. He is very nice and there are a lot of well informed people on this site. I'm sure some of them can help you more than I can. I wish the best for your mom and for you.
    Sandeeb

    now
    How are you doing now. My 12 yr old son was diagnosed in September, we are still in the hospital.
  • suzanne-m
    suzanne-m Member Posts: 1
    #25
    Adrenal Cortical Cancer
    One of my close friends was diagnosed just a few weeks ago with Adrenal cancer. She had surgery two weeks ago to remove the adrenal gland, a portion of her kidney, and a portion of her liver. She went to have her staples removed two days ago and the doctor told her she had Stage IV and that it was now in her blood stream. I highly suggest the book "Nothing to Fear" The Key to Cancer Survival by Larry Burkett. He provides invaluable information for alternative therapies I would have never known about! After reading the book (super easy and fast read) I felt like an expert. That's important since there's little time to make decisions. More later...
  • mmsetta
    mmsetta Member Posts: 2
    #26
    WoundedAngel_2009 said:

    I also have adrenal cancer
    Hang in there My tumor was found by a stroke of luck and removed Jan 19 2009. They got it out incapsulated and said it didnt look to have been outside the capsule but it still scares me. I am taking Lysodren 1000mg 2x's a day and doing the labs as ordered. They did a CT of my abdom and chest and said all looked good but they didnt do the pelvic area even though it was ordered? My doctor nurse called today and wants to see me next week,that scares me to death as I wasnt scheduled til June but one day at a time is all i can do. I was told I was Stage II, God Bless

    question about post surgery issues
    Hello to everyone. Your tumor sounds very similar to my wife's tumor removed at around the same time. Her's was 14 cm, but encapsulated as well...same exact thing as your case. Since then she has had a baby, and another surgery after a scan in 2011 showed something on her intestine. It turned out to be just benign lyph node. So, since then she is totally of Modotane or any other preventative meds.

    Here is my delemma. the only residual effects of the surgeries is a very bloated stomach, which, a year after her last surgery, doesnt show signs of reducing. The rest of her body,due to her hormones coming back in line, has fully recoved to pre-tumor form. But, her stomach is bloated to the point of people assuming she is pregnant daily. She has a thin stature so it is all the more obvious.

    In the grand scheme of things, it is not much to deal with considering the alternative. but, for her, I know it has become a major issue. Not only does is force her to recall her surgeries and the fear of recurrance, but it is just a general self-esteme thing and an annoyance.

    Her surgeons just passed it off and not a problem. She is seeing a PT, but I don't really trust what she is saying. Her stomach bloats up and varies daily - some days it protrudes a lot, then the next day it is back down.

    for a while now we've been just dealing with it. but she brings it up daily and I am at the point of trying to seek out alternate answers.

    I am wondering if anyone has any suggestions???? Has anyone ever dealt with the boating/swelling for this long a period of time???

    Any help is much appreciated and God be with you. Thank You.
  • JeromeNLady21
    JeromeNLady21 Member Posts: 1
    #27
    mmsetta said:

    question about post surgery issues
    Hello to everyone. Your tumor sounds very similar to my wife's tumor removed at around the same time. Her's was 14 cm, but encapsulated as well...same exact thing as your case. Since then she has had a baby, and another surgery after a scan in 2011 showed something on her intestine. It turned out to be just benign lyph node. So, since then she is totally of Modotane or any other preventative meds.

    Here is my delemma. the only residual effects of the surgeries is a very bloated stomach, which, a year after her last surgery, doesnt show signs of reducing. The rest of her body,due to her hormones coming back in line, has fully recoved to pre-tumor form. But, her stomach is bloated to the point of people assuming she is pregnant daily. She has a thin stature so it is all the more obvious.

    In the grand scheme of things, it is not much to deal with considering the alternative. but, for her, I know it has become a major issue. Not only does is force her to recall her surgeries and the fear of recurrance, but it is just a general self-esteme thing and an annoyance.

    Her surgeons just passed it off and not a problem. She is seeing a PT, but I don't really trust what she is saying. Her stomach bloats up and varies daily - some days it protrudes a lot, then the next day it is back down.

    for a while now we've been just dealing with it. but she brings it up daily and I am at the point of trying to seek out alternate answers.

    I am wondering if anyone has any suggestions???? Has anyone ever dealt with the boating/swelling for this long a period of time???

    Any help is much appreciated and God be with you. Thank You.

    Hi Mmsetta,
    My wife was diagnosed with adrenal cortical cancer back in 2009. The tumour and adrenal gland was removed by surgery. She did not undergo any medical treatment after the surgery. Then on June 2010 due to an appendicitis the doctors found that the cancer is back and had spread to her stomach. (this can be scary for you and I have no intentions to). September 2010 she started her Mitotane medication. She is currently on 2.5grams AM and 2.5grams at night. 3 months before she started her Mitotane treatment she took lots of Vit C (6000mg) and Omega 3 F-Oil (4 cap) everyday and I believe this has help her as the first 3 scans she had (CT scan every 3 months) have shown significant changes on the tumours in her tummy. Tumours shrunk 30-45%. We stopped the Vitamins as one of the Oncologist (we are seing 4-5 different Dr depending on who's on duty) said they it may interfere with the Mitotane.

    AS on the case of your wife, on my opinion, It would be honestly good to have it checked, scanned and tested. My wife as I said did not take any medication after her surgery as the surgeon said that they may have taken the tumours out just right on time before it has spread out. She was declared clear from cancer 9 months after her scan and 3 months after that the cancer is back in her tummy.

    Early detection is always good as it gives us a better chance of beating cancer. I hope i did not scare you and always remember all our situations are different. One of my regrets is that my wife did not have any treatment after the surgery. We could have prevented the spread of the cancer if we pushed for the surgeons to refer us to the oncology specialist for further analysis.

    Have more faith...and always hope for the best.

    At the moment I am looking for those who are taking any supplements while in Mitotane...I just have a strong suspicion that the Vitamin C (high dose and high quality) and Omega fish oil have help the treatment... for any comment on this please feel free to do so...

    Thanks and all the best to everyone! God Bless!

    Jerome n' Lady
    Auckland, NZ
  • grant.anita
    grant.anita Member Posts: 1
    #28
    JeromeNLady21 said:

    Hi Mmsetta,
    My wife was diagnosed with adrenal cortical cancer back in 2009. The tumour and adrenal gland was removed by surgery. She did not undergo any medical treatment after the surgery. Then on June 2010 due to an appendicitis the doctors found that the cancer is back and had spread to her stomach. (this can be scary for you and I have no intentions to). September 2010 she started her Mitotane medication. She is currently on 2.5grams AM and 2.5grams at night. 3 months before she started her Mitotane treatment she took lots of Vit C (6000mg) and Omega 3 F-Oil (4 cap) everyday and I believe this has help her as the first 3 scans she had (CT scan every 3 months) have shown significant changes on the tumours in her tummy. Tumours shrunk 30-45%. We stopped the Vitamins as one of the Oncologist (we are seing 4-5 different Dr depending on who's on duty) said they it may interfere with the Mitotane.

    AS on the case of your wife, on my opinion, It would be honestly good to have it checked, scanned and tested. My wife as I said did not take any medication after her surgery as the surgeon said that they may have taken the tumours out just right on time before it has spread out. She was declared clear from cancer 9 months after her scan and 3 months after that the cancer is back in her tummy.

    Early detection is always good as it gives us a better chance of beating cancer. I hope i did not scare you and always remember all our situations are different. One of my regrets is that my wife did not have any treatment after the surgery. We could have prevented the spread of the cancer if we pushed for the surgeons to refer us to the oncology specialist for further analysis.

    Have more faith...and always hope for the best.

    At the moment I am looking for those who are taking any supplements while in Mitotane...I just have a strong suspicion that the Vitamin C (high dose and high quality) and Omega fish oil have help the treatment... for any comment on this please feel free to do so...

    Thanks and all the best to everyone! God Bless!

    Jerome n' Lady
    Auckland, NZ

    Hi JeromenLady21
    My husband was diagnosis with adrenal cortical cancer in May 2012. No surgery but Mitotane building up the dosage to 3g 4 times a day. We believe this is too high and has caused a lot of side affects and currently he is not taken any. Blood test show he is in the therapeutic range. He has had chemo but this did not appear to be working. Kidneys not standing up to it plus other complications. He is also doing Vitamin C, supplements, a change of diet (alkaline). His lumps have shrink or stablised but unsure what is helping this to happen. It could be all of the above?

    Hope all is going well with your wife, and that she is still taking the Vit C and Omega 3.

    Take Care
    Grant.anita
    Hamilton New Zealand
  • Ococ321
    Ococ321 Member Posts: 1
    #29
    adrenal cancer

    My wife (she live in Mexico)notice a tumor in middle of December 2012 that turned out to be a adrenal cortical carcinoma. In January this tumor has 31centimeters by 15 cm and had a date to surgery in Feb the 8th but the doctors told her 2 days before that the tumor was a attached to a vein and they couldn't doit. I decided to send her back to her home in Puebla and call to a surgeon that become doctor in alternative medicine in Peru, his name is Javier Haro Salvatierra. He advised me to buy a medicine called Ganoderma Lucidum (chinese mushroom). These comin in envelops, 2 x 1, 3 x 1 and ganochocolate. like a cofee filter size. Mix 2 of 2 x 1, 2 of 3 x 1 and 4 of ganochocolate, and 8 oz of hot water, shake well and take a spoon in the morning and another in the afternoon 30 minutes after the meals. To be honest I was desperate and did not what to do besides pray. I just became citizen and I don't chance to bring her to US yet. Well after a month, the tumor shinked, now is 17 cm by 8 cm, she is eating normal and gaining some weight. She just started a double dosis and I expect to she can go for a surgery (with much less risk) in a couple months. I couldn'd find a retailer in Mexico so I just ordering a second package os 2 boxes,2 boxes and 4 of ganocholate to a friend in Peru. The cost is not really much, it cost my about 300 dollars and it last for 2 moths with a single dosis. I hope my experience helps other to find a hope, God bless you all

  • Emmasykes
    Emmasykes Member Posts: 2
    #30
    JeromeNLady21 said:

    Hi Mmsetta,
    My wife was diagnosed with adrenal cortical cancer back in 2009. The tumour and adrenal gland was removed by surgery. She did not undergo any medical treatment after the surgery. Then on June 2010 due to an appendicitis the doctors found that the cancer is back and had spread to her stomach. (this can be scary for you and I have no intentions to). September 2010 she started her Mitotane medication. She is currently on 2.5grams AM and 2.5grams at night. 3 months before she started her Mitotane treatment she took lots of Vit C (6000mg) and Omega 3 F-Oil (4 cap) everyday and I believe this has help her as the first 3 scans she had (CT scan every 3 months) have shown significant changes on the tumours in her tummy. Tumours shrunk 30-45%. We stopped the Vitamins as one of the Oncologist (we are seing 4-5 different Dr depending on who's on duty) said they it may interfere with the Mitotane.

    AS on the case of your wife, on my opinion, It would be honestly good to have it checked, scanned and tested. My wife as I said did not take any medication after her surgery as the surgeon said that they may have taken the tumours out just right on time before it has spread out. She was declared clear from cancer 9 months after her scan and 3 months after that the cancer is back in her tummy.

    Early detection is always good as it gives us a better chance of beating cancer. I hope i did not scare you and always remember all our situations are different. One of my regrets is that my wife did not have any treatment after the surgery. We could have prevented the spread of the cancer if we pushed for the surgeons to refer us to the oncology specialist for further analysis.

    Have more faith...and always hope for the best.

    At the moment I am looking for those who are taking any supplements while in Mitotane...I just have a strong suspicion that the Vitamin C (high dose and high quality) and Omega fish oil have help the treatment... for any comment on this please feel free to do so...

    Thanks and all the best to everyone! God Bless!

    Jerome n' Lady
    Auckland, NZ

    Adrenal Cancer

    Hi Jerome, I've just had a 10 cm cancerous tumour removed, and just started mitotane, currently on 4 tabs a day, building up to 10 a date, I'm also taking supplements,  I take a large dose of vitamin d3, cucumin, gloucosomine and makula honey.  I've also stopped eating red meats, no diary, or anything processed.  I have a fruit smoothly every morn to get my vitamin C To which I put flaxseed in, I've run all this past my oncologist who said would be fine.  ive seen two oncologists and both have said any over counter vitamins ok?    I do hope your wife is ok, if you would like to chat more please IM me. Thanks Emma 

  • JeromeNLady
    JeromeNLady Member Posts: 2
    #31
    Emmasykes said:

    Adrenal Cancer

    Hi Jerome, I've just had a 10 cm cancerous tumour removed, and just started mitotane, currently on 4 tabs a day, building up to 10 a date, I'm also taking supplements,  I take a large dose of vitamin d3, cucumin, gloucosomine and makula honey.  I've also stopped eating red meats, no diary, or anything processed.  I have a fruit smoothly every morn to get my vitamin C To which I put flaxseed in, I've run all this past my oncologist who said would be fine.  ive seen two oncologists and both have said any over counter vitamins ok?    I do hope your wife is ok, if you would like to chat more please IM me. Thanks Emma 

    Adrenal Cancer

    Hi Emma,

     

    How are you doing? I hope you are all good. It has been awhile since I have visited this forum. Lots of ups and down for my wife lady for the past two years. She lost a lot of weight and continues to battle this adrenal cancer. She had one course of Dendritic Stemcell theraphy in Makati Medical Centre December of 2012. It has help her a lot to regain some energy after being knocked down for a few months which had led the oncologist to stop the mitotane as it seems to no longer work for her.

    After her stemcell treatment she was able to drive and normal halfday activities without getting sick. But mid 2014 her tummy started to grow and retain a lot of water. She gets exhausted easily now and continuously loosing her weight. She had same issues of being asked as to when is her baby due. 

    I am constantly on the look out for what can help her and eventually beat this cancer.

    I wish to share more as to what we are currently doing and would like to know what works for you which may help her in any way

    You may contact me on my mobile if you are in NZ- 02102455999 or skype jerome.jalbuena

     

    Thanks and God bless you!

     

    Jerome

     

     

  • JeromeNLady
    JeromeNLady Member Posts: 2
    #32
    grant.anita said:

    Hi JeromenLady21
    My husband was diagnosis with adrenal cortical cancer in May 2012. No surgery but Mitotane building up the dosage to 3g 4 times a day. We believe this is too high and has caused a lot of side affects and currently he is not taken any. Blood test show he is in the therapeutic range. He has had chemo but this did not appear to be working. Kidneys not standing up to it plus other complications. He is also doing Vitamin C, supplements, a change of diet (alkaline). His lumps have shrink or stablised but unsure what is helping this to happen. It could be all of the above?

    Hope all is going well with your wife, and that she is still taking the Vit C and Omega 3.

    Take Care
    Grant.anita
    Hamilton New Zealand

    Adrenal Cancer patient-Auckland

    How are you doing? I hope you are all good. It has been awhile since I have visited this forum. Lots of ups and down for my wife lady for the past two years. She lost a lot of weight and continues to battle this adrenal cancer. She had one course of Dendritic Stemcell theraphy in Makati Medical Centre December of 2012. It has help her a lot to regain some energy after being knocked down for a few months which had led the oncologist to stop the mitotane as it seems to no longer work for her.

    She is still taking the Vit C and Omega Fish oil. We added Xanthone from pure magostene capsules (MX3). I highly believe that the MX3 is working for her- protecting her kidney and liver from all the painrelief (M-eslon, sevredol, paracetamol), and other medications she takes.

    After her stemcell treatment she was able to drive and normal halfday activities without getting sick. But mid 2014 her tummy started to grow and retain a lot of water. She gets exhausted easily now and continuously loosing her weight. She had same issues of being asked as to when is her baby due. 

    I am constantly on the look out for what can help her and eventually beat this cancer.

    I wish to share more as to what we are currently doing and would like to know what works for you which may help her in any way

    You may contact me on my mobile if you are in NZ- 02102455999 or skype jerome.jalbuena

     

    Thanks and God bless you!

     

  • matthewtaylor
    matthewtaylor Member Posts: 2
    #33
    Ococ321 said:

    adrenal cancer

    My wife (she live in Mexico)notice a tumor in middle of December 2012 that turned out to be a adrenal cortical carcinoma. In January this tumor has 31centimeters by 15 cm and had a date to surgery in Feb the 8th but the doctors told her 2 days before that the tumor was a attached to a vein and they couldn't doit. I decided to send her back to her home in Puebla and call to a surgeon that become doctor in alternative medicine in Peru, his name is Javier Haro Salvatierra. He advised me to buy a medicine called Ganoderma Lucidum (chinese mushroom). These comin in envelops, 2 x 1, 3 x 1 and ganochocolate. like a cofee filter size. Mix 2 of 2 x 1, 2 of 3 x 1 and 4 of ganochocolate, and 8 oz of hot water, shake well and take a spoon in the morning and another in the afternoon 30 minutes after the meals. To be honest I was desperate and did not what to do besides pray. I just became citizen and I don't chance to bring her to US yet. Well after a month, the tumor shinked, now is 17 cm by 8 cm, she is eating normal and gaining some weight. She just started a double dosis and I expect to she can go for a surgery (with much less risk) in a couple months. I couldn'd find a retailer in Mexico so I just ordering a second package os 2 boxes,2 boxes and 4 of ganocholate to a friend in Peru. The cost is not really much, it cost my about 300 dollars and it last for 2 moths with a single dosis. I hope my experience helps other to find a hope, God bless you all

    Hi everyone,
    Sorry if this

    Hi everyone,

    Sorry if this comes off slightly more direct.

    Any news on the tumour removal from the last post?

    I have stage four. Male, 27, original tumour was on the left adrenal. Had surgery with success...one large baby size tumour hiding away removed, along with a kidney, ...4 metastises...2 spine, one hip, one liver...atm i'm about half way through chemo: edp...struggling with mitotane though  

    firstly, hope your all aware about the university of michigan ...google it for patients guides. They also have consultants and surgeons with some specialisations for this particular cancer, and trials are conducted either in relation to, or in fact at this health centre...and they do a second opinion service if your interested.

    ...in the uk theyre presently doing research on whether mitotane should be continued or not...essentially, with respect thats literally the bare minimum level of exploration. A little frustrating when lots of people are dieing. 

    Any one tried anything special? Foods, diets, teas, canabis oil (thc/cbd)...or anything in conjunction...something + chemo? 

    Anyone left journals? keeping blogs of where theyre at?

    chemo experiences? How were the bloods for you all the way through?

    Please share a story, or if you believe in a product, no matter why, POST IT!

    we're all in a race against time, and we need all the help human kind can muster 

    Id be happy to tell anyone intrested, the surgeons/drs ive been involved with...and im fair read into some of the trials etc if anyone wants any links?     

        

  • matthewtaylor
    matthewtaylor Member Posts: 2
    #34
    matthewtaylor said:

    Hi everyone,
    Sorry if this

    Hi everyone,

    Sorry if this comes off slightly more direct.

    Any news on the tumour removal from the last post?

    I have stage four. Male, 27, original tumour was on the left adrenal. Had surgery with success...one large baby size tumour hiding away removed, along with a kidney, ...4 metastises...2 spine, one hip, one liver...atm i'm about half way through chemo: edp...struggling with mitotane though  

    firstly, hope your all aware about the university of michigan ...google it for patients guides. They also have consultants and surgeons with some specialisations for this particular cancer, and trials are conducted either in relation to, or in fact at this health centre...and they do a second opinion service if your interested.

    ...in the uk theyre presently doing research on whether mitotane should be continued or not...essentially, with respect thats literally the bare minimum level of exploration. A little frustrating when lots of people are dieing. 

    Any one tried anything special? Foods, diets, teas, canabis oil (thc/cbd)...or anything in conjunction...something + chemo? 

    Anyone left journals? keeping blogs of where theyre at?

    chemo experiences? How were the bloods for you all the way through?

    Please share a story, or if you believe in a product, no matter why, POST IT!

    we're all in a race against time, and we need all the help human kind can muster 

    Id be happy to tell anyone intrested, the surgeons/drs ive been involved with...and im fair read into some of the trials etc if anyone wants any links?     

        

    Oh! 
    Also, during chemo, for

    Oh! 

    Also, during chemo, for long sessions, foot massages are available...the lady who does it is somehing of a reflexologist, for some reason, this worked quite positively on the antisickness front for me, as did a liitle bit of psycology

     

  • Ckalenik
    Ckalenik Member Posts: 1
    #35
    matthewtaylor said:

    Hi everyone,
    Sorry if this

    Hi everyone,

    Sorry if this comes off slightly more direct.

    Any news on the tumour removal from the last post?

    I have stage four. Male, 27, original tumour was on the left adrenal. Had surgery with success...one large baby size tumour hiding away removed, along with a kidney, ...4 metastises...2 spine, one hip, one liver...atm i'm about half way through chemo: edp...struggling with mitotane though  

    firstly, hope your all aware about the university of michigan ...google it for patients guides. They also have consultants and surgeons with some specialisations for this particular cancer, and trials are conducted either in relation to, or in fact at this health centre...and they do a second opinion service if your interested.

    ...in the uk theyre presently doing research on whether mitotane should be continued or not...essentially, with respect thats literally the bare minimum level of exploration. A little frustrating when lots of people are dieing. 

    Any one tried anything special? Foods, diets, teas, canabis oil (thc/cbd)...or anything in conjunction...something + chemo? 

    Anyone left journals? keeping blogs of where theyre at?

    chemo experiences? How were the bloods for you all the way through?

    Please share a story, or if you believe in a product, no matter why, POST IT!

    we're all in a race against time, and we need all the help human kind can muster 

    Id be happy to tell anyone intrested, the surgeons/drs ive been involved with...and im fair read into some of the trials etc if anyone wants any links?     

        

    My husband was diagnosed with

    My husband was diagnosed with Stage II ACC three years ago In April 2012. He had  surgery to remove the tumor and was also placed on Mitotane for as long as he could tolerate it, nine months. We followed a very strict low carb no sugar diet  and saw a doctor of naturopathy along with our Md for two years after surgery. Once we passed the two year mark we got lazy and stopped the strict healthy diet.  in April 2015 he went in for a check up and had a recurrence of the cancer In the liver and two additional rumors along the kidney. He just had surgery one week ago removing the tumors and we are back to our healthy diet. I can't say for sure if the diet helped before but we're desperate and going to fight The cancer again  One thing is for sure, the diet certainly helped my husband to feel well After the Mitotane treatment was done  his blood work has been normal even with the recurrence  

    We love  our dr at md Anderson but have also thought of getting a second look at Michigan with dr hammer. It's just a long way from Texas and we have two young children.  I am also exploring the cannabis oil and other alternative therapies.  we were told that Mitotane only works on 20 % of those who take it and the side effects are terrible.  I don't know if my husband will want to go through it again considering how poorly it performs for most patients.  

  • victoriousval
    victoriousval Member Posts: 1
    #36
    Ckalenik said:

    My husband was diagnosed with

    My husband was diagnosed with Stage II ACC three years ago In April 2012. He had  surgery to remove the tumor and was also placed on Mitotane for as long as he could tolerate it, nine months. We followed a very strict low carb no sugar diet  and saw a doctor of naturopathy along with our Md for two years after surgery. Once we passed the two year mark we got lazy and stopped the strict healthy diet.  in April 2015 he went in for a check up and had a recurrence of the cancer In the liver and two additional rumors along the kidney. He just had surgery one week ago removing the tumors and we are back to our healthy diet. I can't say for sure if the diet helped before but we're desperate and going to fight The cancer again  One thing is for sure, the diet certainly helped my husband to feel well After the Mitotane treatment was done  his blood work has been normal even with the recurrence  

    We love  our dr at md Anderson but have also thought of getting a second look at Michigan with dr hammer. It's just a long way from Texas and we have two young children.  I am also exploring the cannabis oil and other alternative therapies.  we were told that Mitotane only works on 20 % of those who take it and the side effects are terrible.  I don't know if my husband will want to go through it again considering how poorly it performs for most patients.  

    others to connect with

    My mom was just diagnosed, and if there's anyone who is still on this forum who is experiencing adrenal cancer or has a family member dealing with it, I'd love a reply.  It's hard to find others since this cancer is so rare.  I am a breast cancer survivor and can find plenty of support, but she feels all alone because she knows no one who is going through what she is.  Hope to hear from someone so I can help her login and talk with someone about their coping strategies.

  • MeganTMcFarland
    MeganTMcFarland Member Posts: 3
    #37
    Doctor in Northern California

    Hello! My mother was just diagnosed with ACC. She had a tumor removed at MD Anderson and is starting Mitotane in a few weeks. She's going to continue her treatment with her Houston doctors and will go there every three montns for CT Scans. However, she's looking for an endrocrinologist in Northern California who can help manage her Mitotane usage - make sure she has the right dosage, adjust as neccesary, etc. Is anyone from Northern CA and can recommend a doctor? She lives in Davis, but is willing to travel. 

    It was great to read all these responses, even if they are from years past. This cancer is so rare it's hard to find chat rooms and places to share experiences online. If there's another chat room that's more active on this topic, could you let me know?

  • MeganTMcFarland
    MeganTMcFarland Member Posts: 3
    #38
    victoriousval said:

    others to connect with

    My mom was just diagnosed, and if there's anyone who is still on this forum who is experiencing adrenal cancer or has a family member dealing with it, I'd love a reply.  It's hard to find others since this cancer is so rare.  I am a breast cancer survivor and can find plenty of support, but she feels all alone because she knows no one who is going through what she is.  Hope to hear from someone so I can help her login and talk with someone about their coping strategies.

    Connecting

    Hi Val - I am new to this site. My mother was diagnosed with ACC very recently. I just wanted to see how you are doing and how things are progressing. Are you taking Mitotane? Do you have any tips for managing the side effects? My mom will start her dosage in a few weeks. 

  • MeganTMcFarland
    MeganTMcFarland Member Posts: 3
    #39
    New users happy to connect!

    Hello! It doesn't look like this site is used too often anymore. If there is anyone new to this specific forum and interested in connecting, please send me a note. My mom is now in her third month of mitotane. She's adjusting, but it's a long process. Her doctor said that she could take a double dose at night and try to sleep through the nausea. She tried that last night for the first time and was sick all night, unfortunately. She may give it a try again in a few weeks. 

  • JRlombardo
    JRlombardo Member Posts: 2
    edited January 2018 #40
    Adrenal Cancer 8cm

    Hi,

    I know this is a very small forum group that is not very active assuming based on the fact of the rarity of adrenal cancer.  My mom was diagnosed with Cushings Disease and had an 8cm tumor removed (along with her entire right adrenal gland).  The surgeon said the tumor was pressing on the kidney but had not done any other damage.  We just received the pathology report.  The original test came back inconclusive, but that group sent it to Fox Chase Cancer in Philadelphia where it was confirmed cancerous.  We have an appt with Dr. Vaughn at the Univ of Pennslyvania lin about a month.  My question would be to anyone: Was your malignant tumor encapsulated?  Is there a chance it has not spread?  

    Any thoughts or insights would be appreciated since we are now in the waiting game until Dr. appt next month.

    Thank you.

  • JRlombardo
    JRlombardo Member Posts: 2
    #41
    MeganTMcFarland said:

    New users happy to connect!

    Hello! It doesn't look like this site is used too often anymore. If there is anyone new to this specific forum and interested in connecting, please send me a note. My mom is now in her third month of mitotane. She's adjusting, but it's a long process. Her doctor said that she could take a double dose at night and try to sleep through the nausea. She tried that last night for the first time and was sick all night, unfortunately. She may give it a try again in a few weeks. 

    Mitotane

    Hi,

    I was hoping you could comment on your mom's use of Mitotane.  Did she have bad side effects!  My mom just found out she has adrenal cancer.  As you know, it is hard to find much information regarding adrenal cancer.

    Thank you ,

    Jen

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