scared for husband need help!!! collecting duct cacinoma mets to lungs...

aldiyana
aldiyana Member Posts: 16
in Kidney Cancer #1
my husband was diagnozed with collecting duct cacinoma on his kidney which now mets to his lungs a few weeks ago...they took out his left kidney and the tumor that was attached to it about 2 months ago...he should be starting VOTRIENT soon...to get rid of the mets...anyone useing this drug? and how is it going?

i would also appriciate any other ALLTERNATIVE ways that anyone has tried. herbs, teas ect...to help things along...we are scared and willing to do everything and anything to save him...

hes 27 im 24 and weve been married 4 years (our 4 year annivarsary is no on aug 16th)we have two little girls one is 2 and half years and the other 9 months...

every comment, suggestion, addvice or prayer is SO SO SO MUCH APPRICIATED...

lots of love and strenght x0x0

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Stay Positive
    aldyana,

    As you have read on the other posts, others are having good results with Votrient. Your husband has a distinct advantage because he is so young for this disease. When I started my journey 10 years ago there were few alternatives for those with a challanging diagnosis such as his. Now there are many things being explored with some really amazing results. Having a positive attitude is one of the best alternative drugs available. You will find this group very helpful. Hopefully you will be able to see good results in a matter of months.


    Icemantoo
  • aldiyana
    aldiyana Member Posts: 16
    #3
    icemantoo said:

    Stay Positive
    aldyana,

    As you have read on the other posts, others are having good results with Votrient. Your husband has a distinct advantage because he is so young for this disease. When I started my journey 10 years ago there were few alternatives for those with a challanging diagnosis such as his. Now there are many things being explored with some really amazing results. Having a positive attitude is one of the best alternative drugs available. You will find this group very helpful. Hopefully you will be able to see good results in a matter of months.


    Icemantoo

    Icemantoo
    thank you for your
    Icemantoo

    thank you for your reply...

    i pray that he also has good results from Votrient...as i see now that many people on here do...i know that his cancer is rare and agressive but i believe in god and im sure with our help hes going to get through this...

    thank you for the support...i was also wondering if you know anything about MDX-1106? if u do could you explain to me what this is? and how it works? as i see many people are useing this aswell with good results?

    stay safe and healthy...=)
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #4
    aldiyana said:

    Icemantoo
    thank you for your
    Icemantoo

    thank you for your reply...

    i pray that he also has good results from Votrient...as i see now that many people on here do...i know that his cancer is rare and agressive but i believe in god and im sure with our help hes going to get through this...

    thank you for the support...i was also wondering if you know anything about MDX-1106? if u do could you explain to me what this is? and how it works? as i see many people are useing this aswell with good results?

    stay safe and healthy...=)

    MDX-1106
    Come in Fox, your help is needed as our MDX expert.

    aldiyana, do get Gerald White's MAARS CD and book for extra help, using meditation and visualisation techniques to help boost your Husband's immune system. Go to his website at

    http://cancerwarsmaarsjourney.com/

    We'll all be pulling for your whole Family at this difficult time.
  • garym
    garym Member Posts: 1,647
    #5
    MDX & Votrient...
    aldiyana,

    Very sorry to learn what you and your husband are going through, but there are therapies available today that were not available a short time ago, there is hope of a cure. foxhd is our resident MDX expert, he is doing very well and is beyond his diagnosed "expiration date. alice124's husband John is on an MDX Votrient combination trial which may be of particular interest to you. You will probably be hearing from both, but in the meantime check out their stories and share them with your husband.

    Hang in there,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    aldiyana said:

    Icemantoo
    thank you for your
    Icemantoo

    thank you for your reply...

    i pray that he also has good results from Votrient...as i see now that many people on here do...i know that his cancer is rare and agressive but i believe in god and im sure with our help hes going to get through this...

    thank you for the support...i was also wondering if you know anything about MDX-1106? if u do could you explain to me what this is? and how it works? as i see many people are useing this aswell with good results?

    stay safe and healthy...=)

    MDX
    Hello aldiyana. I have been on the MDX-1106 since the beginning of the year. By the time my trial started, I had mets in lungs, liver, lymph nodes, pelvis and spine. I am currently doing exceptionally well and it is now expected that I will be here for a long time to come. As you may or may not know, Chemo and radiation are not effective against kidney cancer.But our immune system has proven to be able to fight the cancer if given a little help. Kidney cancer has a way of blocking our immune system from identifying it as a threat. Then our T-cells in our immune system die off thinking they have nothing to do. This is how the cancer is able to grow. What the MDX is able to do is amazing. It is a natural antibody. Administered through an IV, the MDX binds with the molecule that programs the T-cels to die off. Therefore it is also called "anti-PD1" (anti programmed die off".
    By binding to this molecule the T-cells re-identify the cancer cells as an invader. They then attack the cancer and work to eliminate it. At this point, I've had at least 20 tumors eliminated. Most others are shrinking and are expected to continue to improve. Side effects are minimal to none. It may become one of the miracle drugs in the fight against cancer. So far the response rate is about 30% of patients. I am fortunate indeed.
    The bad news is that this drug is still only in the trial phase and not available to most people. The message here is to do whatever it takes to fight this disease in the meantime. As treatments continue to evolve the cure for many people will be just around the corner. It is important to educate yourself on current available treatments and clinical trials. Hopefully the right one will be found. Good luck, Fox.
  • alice124
    alice124 Member Posts: 896 Member
    #7
    Your Husband's Illness
    Hello Aldiyana,

    So sorry you are facing such a difficult time. Keep in mind when you research this rare type of cancer that discoveries are being made all the time increasing the number and types of treatments available to kidney cancer patients. Progress is being made. Do not give up.
    Fox gave you an exemplary explanation of the MDX 1106 that he is currently on. Fox is on MDX alone; my husband is on MDX and Votrient, though his dosage of MDX is only 20% of Fox’s dosage. In addition to an every-three-week infusion of MDX, he takes 800 mg of Votrient daily.

    So far, like Fox, he has had no serious side effects from either medication. He is improving –less pain – a little more energy – and shrinkage of tumors. He had a 31 % shrinkage of tumors after six weeks on the trial and further reduction after 12 weeks, though we haven’t been given a percentage yet. So far MOST of the improvement has been with the mets in his lungs. He has not seen the rapid improvement that Fox has had, but, again, his dosage of the MDX is much lower. And I can’t tell you if his improvement is from the MDX, the Votrient, or the combination of the two.

    In addition to Gerald Whites’ MAARS book/cd, many of us here would recommend the Vitamix to encourage healthier eating with fresh fruits and vegetables (and frozen cocktails for the caregiver).

    You didn’t say where you were located. Do you have any trial information available? A quick search brought up a clinical trial that your husband may or may not be eligible for, but—if I were you—I would make some calls. I pulled up this link because it had a contact name at Hopkins that I thought might point you in the right direction.
    http://clinicaltrials.gov/show/NCT00729664

    Again, while the internet is a wonderful tool, remember material that is on the internet stays on the internet. So you are very often reading dated material.

    Please keep us posted on your husband’s progress. You and your family are in my prayers. Godspeed.
  • alice124
    alice124 Member Posts: 896 Member
    #8
    Votrient
    I also meant to refer you to earlier postings. I know K Jones asked about "Votrient Side Effects" on 05/08/2012 when her husband started his Votrient regime. Several people responded there that may give you some idea of what could be the side effects. I don't recall seeing anything more recent form KJones but I could have missed it.
  • aldiyana
    aldiyana Member Posts: 16
    #9
    foxhd said:

    MDX
    Hello aldiyana. I have been on the MDX-1106 since the beginning of the year. By the time my trial started, I had mets in lungs, liver, lymph nodes, pelvis and spine. I am currently doing exceptionally well and it is now expected that I will be here for a long time to come. As you may or may not know, Chemo and radiation are not effective against kidney cancer.But our immune system has proven to be able to fight the cancer if given a little help. Kidney cancer has a way of blocking our immune system from identifying it as a threat. Then our T-cells in our immune system die off thinking they have nothing to do. This is how the cancer is able to grow. What the MDX is able to do is amazing. It is a natural antibody. Administered through an IV, the MDX binds with the molecule that programs the T-cels to die off. Therefore it is also called "anti-PD1" (anti programmed die off".
    By binding to this molecule the T-cells re-identify the cancer cells as an invader. They then attack the cancer and work to eliminate it. At this point, I've had at least 20 tumors eliminated. Most others are shrinking and are expected to continue to improve. Side effects are minimal to none. It may become one of the miracle drugs in the fight against cancer. So far the response rate is about 30% of patients. I am fortunate indeed.
    The bad news is that this drug is still only in the trial phase and not available to most people. The message here is to do whatever it takes to fight this disease in the meantime. As treatments continue to evolve the cure for many people will be just around the corner. It is important to educate yourself on current available treatments and clinical trials. Hopefully the right one will be found. Good luck, Fox.

    ---texas wedge thank you for
    ---texas wedge thank you for the info!

    dear foxhd

    ive read your story and find it insparational and it truelly gives me hope for my husband...
    thank you so much for explaning to me in such detail what MDX is...

    im very intrested in it...it truelly sounds like a miracle drug!!!...but sadlly i dont think that i could get my hands on it...i live in europe, bosnia and Hercegovina to be exact and i dont think we dont have access to this drug...i will be asking my husbands doctors about it but i will be impressed if they even know about it...i would appriciate if if can tell me wher in the world this is available at?

    my husbands main tumor that was located on the left kidney has been removed along with the kidney...the tumor was 10cm. it didnt distroy or affect anything around it no tissue, the spleen is healthy his urinal tract is fine...nothing everything around it is perfectlly fine its just that it spread to the lungs...

    the doctors told us only that his lypmh nodes are enlarged we only found out 5 days ago that they are mets according to them...and how they know this i ask myself when they didnt even do any tests to make sure that, that is apsolutlly the case...he has had CAT scas done and x-rays...is that enough to see the mets??? is there a posbility that the lypme nodes are only enlarged due to that there was a tumor in the body? and thats how they reacted to it??? he also has a persitant cough since december last year...that was his only symptome...no blood in urin no nothing of that sort...mild temp to about 37C...and the cough goes away when hes sleeping and when he rests and doesnt talk much...

    thank you again for all this information...you truelly have given me some more hope...i will continue to fight for my husband...god bless you for your kind words and addvice i wish you all the best in life and much much HEALTH for all your future years!
  • aldiyana
    aldiyana Member Posts: 16
    #10
    foxhd said:

    MDX
    Hello aldiyana. I have been on the MDX-1106 since the beginning of the year. By the time my trial started, I had mets in lungs, liver, lymph nodes, pelvis and spine. I am currently doing exceptionally well and it is now expected that I will be here for a long time to come. As you may or may not know, Chemo and radiation are not effective against kidney cancer.But our immune system has proven to be able to fight the cancer if given a little help. Kidney cancer has a way of blocking our immune system from identifying it as a threat. Then our T-cells in our immune system die off thinking they have nothing to do. This is how the cancer is able to grow. What the MDX is able to do is amazing. It is a natural antibody. Administered through an IV, the MDX binds with the molecule that programs the T-cels to die off. Therefore it is also called "anti-PD1" (anti programmed die off".
    By binding to this molecule the T-cells re-identify the cancer cells as an invader. They then attack the cancer and work to eliminate it. At this point, I've had at least 20 tumors eliminated. Most others are shrinking and are expected to continue to improve. Side effects are minimal to none. It may become one of the miracle drugs in the fight against cancer. So far the response rate is about 30% of patients. I am fortunate indeed.
    The bad news is that this drug is still only in the trial phase and not available to most people. The message here is to do whatever it takes to fight this disease in the meantime. As treatments continue to evolve the cure for many people will be just around the corner. It is important to educate yourself on current available treatments and clinical trials. Hopefully the right one will be found. Good luck, Fox.

    dear foxhd
    ---texas wedge thank you for the info!

    dear foxhd

    ive read your story and find it insparational and it truelly gives me hope for my husband...
    thank you so much for explaning to me in such detail what MDX is...

    im very intrested in it...it truelly sounds like a miracle drug!!!...but sadlly i dont think that i could get my hands on it...i live in europe, bosnia and Hercegovina to be exact and i dont think we dont have access to this drug...i will be asking my husbands doctors about it but i will be impressed if they even know about it...i would appriciate if if can tell me wher in the world this is available at?

    my husbands main tumor that was located on the left kidney has been removed along with the kidney...the tumor was 10cm. it didnt distroy or affect anything around it no tissue, the spleen is healthy his urinal tract is fine...nothing everything around it is perfectlly fine its just that it spread to the lungs...

    the doctors told us only that his lypmh nodes are enlarged we only found out 5 days ago that they are mets according to them...and how they know this i ask myself when they didnt even do any tests to make sure that, that is apsolutlly the case...he has had CAT scas done and x-rays...is that enough to see the mets??? is there a posbility that the lypme nodes are only enlarged due to that there was a tumor in the body? and thats how they reacted to it??? he also has a persitant cough since december last year...that was his only symptome...no blood in urin no nothing of that sort...mild temp to about 37C...and the cough goes away when hes sleeping and when he rests and doesnt talk much...

    thank you again for all this information...you truelly have given me some more hope...i will continue to fight for my husband...god bless you for your kind words and addvice i wish you all the best in life and much much HEALTH for all your future years!
  • aldiyana
    aldiyana Member Posts: 16
    #11
    alice124 said:

    Your Husband's Illness
    Hello Aldiyana,

    So sorry you are facing such a difficult time. Keep in mind when you research this rare type of cancer that discoveries are being made all the time increasing the number and types of treatments available to kidney cancer patients. Progress is being made. Do not give up.
    Fox gave you an exemplary explanation of the MDX 1106 that he is currently on. Fox is on MDX alone; my husband is on MDX and Votrient, though his dosage of MDX is only 20% of Fox’s dosage. In addition to an every-three-week infusion of MDX, he takes 800 mg of Votrient daily.

    So far, like Fox, he has had no serious side effects from either medication. He is improving –less pain – a little more energy – and shrinkage of tumors. He had a 31 % shrinkage of tumors after six weeks on the trial and further reduction after 12 weeks, though we haven’t been given a percentage yet. So far MOST of the improvement has been with the mets in his lungs. He has not seen the rapid improvement that Fox has had, but, again, his dosage of the MDX is much lower. And I can’t tell you if his improvement is from the MDX, the Votrient, or the combination of the two.

    In addition to Gerald Whites’ MAARS book/cd, many of us here would recommend the Vitamix to encourage healthier eating with fresh fruits and vegetables (and frozen cocktails for the caregiver).

    You didn’t say where you were located. Do you have any trial information available? A quick search brought up a clinical trial that your husband may or may not be eligible for, but—if I were you—I would make some calls. I pulled up this link because it had a contact name at Hopkins that I thought might point you in the right direction.
    http://clinicaltrials.gov/show/NCT00729664

    Again, while the internet is a wonderful tool, remember material that is on the internet stays on the internet. So you are very often reading dated material.

    Please keep us posted on your husband’s progress. You and your family are in my prayers. Godspeed.

    dear alice...
    dear alice...

    thank you for takeing the time to comment...i appriciate it more than i can say!

    you may want to read what i commented to fox...so i dont have to repeate myself...as it will give you a little mor einsight into my husbands case...

    my husband has always been a picky eater...and now its even worse...he has GREAT difficuallty eating...he doesnt have any apettite or when he eats he throws up...usally not the food but liquied...water i assume...ive been trying to get him to eat healthy and give him everything i hear that is good to take in his case...even all the alternative things like herbs...ect...

    i also bought him some pills IMMUNO ACCH i bealieve they are called. they are for boosting the immune sytem...you get 10 pills where you need to take 6 pills a day and cost around 40 euros...once the immine system is boosted you take 2 to keep it that way...and it says that they are made out of some kind of chinease Reishi mushrooms...my husband just started takeing them ill keep an upated how they are working for him...

    is there anything you recommend as an alternative along with takeing votrient of course...has your husband tried any of that?

    thank you from the bottom of my heart for you help and future help...i wish you and you husband lots of health for many many more years....you are in my paryers also...=)

    i will keep you updated!
  • aldiyana
    aldiyana Member Posts: 16
    #12
    garym said:

    MDX & Votrient...
    aldiyana,

    Very sorry to learn what you and your husband are going through, but there are therapies available today that were not available a short time ago, there is hope of a cure. foxhd is our resident MDX expert, he is doing very well and is beyond his diagnosed "expiration date. alice124's husband John is on an MDX Votrient combination trial which may be of particular interest to you. You will probably be hearing from both, but in the meantime check out their stories and share them with your husband.

    Hang in there,

    Gary

    dear gary...
    thank you for your support and info!...i appriciate it...

    keep strong and healthy...=)
  • enae
    enae Member Posts: 18
    #13
    aldiyana said:

    dear alice...
    dear alice...

    thank you for takeing the time to comment...i appriciate it more than i can say!

    you may want to read what i commented to fox...so i dont have to repeate myself...as it will give you a little mor einsight into my husbands case...

    my husband has always been a picky eater...and now its even worse...he has GREAT difficuallty eating...he doesnt have any apettite or when he eats he throws up...usally not the food but liquied...water i assume...ive been trying to get him to eat healthy and give him everything i hear that is good to take in his case...even all the alternative things like herbs...ect...

    i also bought him some pills IMMUNO ACCH i bealieve they are called. they are for boosting the immune sytem...you get 10 pills where you need to take 6 pills a day and cost around 40 euros...once the immine system is boosted you take 2 to keep it that way...and it says that they are made out of some kind of chinease Reishi mushrooms...my husband just started takeing them ill keep an upated how they are working for him...

    is there anything you recommend as an alternative along with takeing votrient of course...has your husband tried any of that?

    thank you from the bottom of my heart for you help and future help...i wish you and you husband lots of health for many many more years....you are in my paryers also...=)

    i will keep you updated!

    Aldiyana
    I am so sorry about your husband diagnosis.My husband and I are from the same part of the world as you - we are from Bulgaria, but live in US for the last 12 years. Sadly most of the medical trials are here in US, but there are some that are in Europe too. You can search available trials that are close to you and see if your husband is a good candidate.
    http://www.cancer.gov/clinicaltrials/search.
    I know my mom took IMMUNO ACCH for her stage4 breast cancer and had a great results. She also used some imaging, meditation and visualization program. She is now cancer free, so have hope.

    About healthy eating - my husband is also very picky eater, but two years ago after his initial diagnosis we adopted the diet and supplement program from the book Anti Cancer - a new way of life, written by the french doctor David Servan - Shreiber. You can order it from Amazon. com - they deliver internationally. While my husband followed the diet and was taking the supplements ( its not anything difficult to find, vitamin D,B12, fish oil, turmeric,etc) he didn't have any signs of recurrence. We got a bit arrogant I guess thinking is all behind us and he stop following the plan and this year they found mets in his abdomen. He started on the diet and supplements again and I hope this boost his immune system again.
    I'll talk to my mom and see if she knows any other even alternative treatments available in Europe.

    My best wishes for you and you husband and you'll be in my prayers!

    Ena
  • aldiyana
    aldiyana Member Posts: 16
    #14
    enae said:

    Aldiyana
    I am so sorry about your husband diagnosis.My husband and I are from the same part of the world as you - we are from Bulgaria, but live in US for the last 12 years. Sadly most of the medical trials are here in US, but there are some that are in Europe too. You can search available trials that are close to you and see if your husband is a good candidate.
    http://www.cancer.gov/clinicaltrials/search.
    I know my mom took IMMUNO ACCH for her stage4 breast cancer and had a great results. She also used some imaging, meditation and visualization program. She is now cancer free, so have hope.

    About healthy eating - my husband is also very picky eater, but two years ago after his initial diagnosis we adopted the diet and supplement program from the book Anti Cancer - a new way of life, written by the french doctor David Servan - Shreiber. You can order it from Amazon. com - they deliver internationally. While my husband followed the diet and was taking the supplements ( its not anything difficult to find, vitamin D,B12, fish oil, turmeric,etc) he didn't have any signs of recurrence. We got a bit arrogant I guess thinking is all behind us and he stop following the plan and this year they found mets in his abdomen. He started on the diet and supplements again and I hope this boost his immune system again.
    I'll talk to my mom and see if she knows any other even alternative treatments available in Europe.

    My best wishes for you and you husband and you'll be in my prayers!

    Ena

    dear ena
    very nice to meet you...im sorry to hear that you and your family have also been affected by this horrible cancer...but also glad to hear that your family members managed to fight of the cancer..and it makes me very hopefull...

    im glad to hear that IMUNNO ACCH gives good results i will keep buying my husband these pills to help him in his fight...they are so very expensive here but worth it if they help...we are blessed with such good family and friends that they are doing everything they can to help us financially as we arnt that good off with money....god bless them...

    im also doing my best to get him to eat healthy...but he also has issues with when eating he starts to gag like the food discusts him and throws up or just spits the bite out and stops eating...the doctor said its because he has been eating so little for the last months...so hope that improves...and he still has that persistant cough which agravetes him and also sometimes make him vomit after a meal...

    i have a few reciepes for alternative medecine...one is a very simple one...you take honey and grind seeds from appricots and mix it all together you get a juicy mixture and this is then taken one table soon in the morning before a meal and once at night...keep it also in the fridge...and thats also suppose to help...so we are trying everything and anything...nothing can make it worse...

    ill take a look at that book ...thank you...

    i hope that your husband if rid of the mets in no time and you are enjoying life again...

    lots of love and health!

    aldiyana
  • aldiyana
    aldiyana Member Posts: 16
    #15
    aldiyana said:

    dear ena
    very nice to meet you...im sorry to hear that you and your family have also been affected by this horrible cancer...but also glad to hear that your family members managed to fight of the cancer..and it makes me very hopefull...

    im glad to hear that IMUNNO ACCH gives good results i will keep buying my husband these pills to help him in his fight...they are so very expensive here but worth it if they help...we are blessed with such good family and friends that they are doing everything they can to help us financially as we arnt that good off with money....god bless them...

    im also doing my best to get him to eat healthy...but he also has issues with when eating he starts to gag like the food discusts him and throws up or just spits the bite out and stops eating...the doctor said its because he has been eating so little for the last months...so hope that improves...and he still has that persistant cough which agravetes him and also sometimes make him vomit after a meal...

    i have a few reciepes for alternative medecine...one is a very simple one...you take honey and grind seeds from appricots and mix it all together you get a juicy mixture and this is then taken one table soon in the morning before a meal and once at night...keep it also in the fridge...and thats also suppose to help...so we are trying everything and anything...nothing can make it worse...

    ill take a look at that book ...thank you...

    i hope that your husband if rid of the mets in no time and you are enjoying life again...

    lots of love and health!

    aldiyana

    UPDATE
    just updateng that hubby is still in hospital...he now has problems with his urinal tract...it got blocked nearly to the point where the urin couldnt come out anymore!

    the doctors unblocked it 2 days ago the first day it was better now it seems its blocked again! no too much but still blocked...and hubby will need laser surgery for them to enlarge the urinal tract and unblock it compleatlly!

    just one more thing to worry about! so tierd and worn out...but still full of hope thanks to all you guys! still praying every second of the day that everything will turn out right...and still waiting to start VOTRIENT...

    i also had another question that i was hopeing someone could answer...the doctors told me that my husbands x-rays and CAT scans of the lungs are pretty much the same from the begining till now...some lymph nodes are a but bigger but some a bit smaller...and i think that means that it seem like its not spreading...that a good sign right?...is that even possible?

    hes still taking the IMMUNO ACCH...and will be in the future...i will let everyone know how thats working for him...but so far i think its makeing a difference, his cough seems to be milder and rarer...and anyone who can afford it should try it...but i will come back with more solid results and let you know if its any good....

    untill then everyone take care and stay healthy!!!

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