Husband Diagnosed 12/06/2016

Johns Wife
Johns Wife Member Posts: 14

My husband was diagnosed just this week with HCC.  He's been seen at The James Cancer Center in Columbus Ohio.  He has one tumor in his liver that is about 2.2 cm.  The Oncologist we saw there has only offered him Nexavar as treatment, and told us to expect 6 months.  I am in desparate search of something more. We have an 11 year old son who needs his daddy around, and there has to be something more that can be done. Anyone with any experience, thoughts, ideas, please respond.  There are no limits I wouldn't go to in order to save him.

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Comments

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited December 2016 #2
    Diagnosed with HCC

    John's wife,
    Please take a deep breath. You have to approach cancer from a common sense approach.  I am from the uterine
    cancer board. I was diagnosed with advanced endometrial cancer Stage 3, Grade 3,  but had many liver metastases
    two months after my surgery, before I was to start treatment. I had a total of 34cm of tumors, besides the liver, they
    were on the spleen, outer rectum and I had nodules on my spleen, kidneys, lungs and outer colon.  Radiologist who
    did liver biopsy told my husband I had 4-6 mos to live my cancer was growing so fast. Do not listen to a doctor who
    tells your husband he has 6 mos to live. Doctors can be so insensitive.Ask you husband's doctor if he is a psychic.

    I worked with an integrative oncologist who put me on a drug called metformin. It is the most prescribed drug in the world
    for diabetes and insulin resistance(pre-diabetes).  It was discovered in 2005 that it has many anti-cancer properties that
    address all the processes involved in the growth and spread of cancer.  I was in total remission 6 months after going on this
    drug (I was considered prediabetic and had high levels of insulin growth factor-1, which fuels many cancers). I believe metformin
    worked on me because many of my risk factors were related to my broken metabolism - I was overweight, high cholesterol,
    borderline high glucose, borderline high blood pressure, high IGF-1 and high iron levels.

    The liver performs many functions in our body, including making glucose and storing iron, and also stores Vitamin D and B12. Low
    levels of Vit 3 can lead to cancer.  I don't know if you husband is diabetic or if he has any of the issues I mention above, but I would
    talk to your doctor about getting him on metformin- you may have to get your internist to prescribe the drug.  Most oncologists will
    not prescribe-there are numerous trials going on with this drug and all types of cancer.  I entered one of those trials but could not
    risk getting a placebo so I got my doctor to just prescribe it for me.  It is a generic drug and very cheap. After one month on metformin,
    88% of all my tumors vanished without any surgery. I went from 34cm down to 4cm total.  The liver tumors were the first ones to go
    away completely. I believe the metformin helped me stop feeding the cancer.

    You might get your husband to test his ferritin levels as well since iron is stored in the liver (along with the spleen).  My levels were
    very high when my cancer metastasized. Every cell needs iron to divide and cancer cells are dividing very quickly. So I believe my
    high glucose and iron levels were one of the reasons my metastases went to my liver and spleen (where there was food to feed them).

    Also, if your husband doesn't have stomach issues, I take 2 low dose aspirins each day. It is well known to be a cancer preventative.
    It inhibits an enzyme called COX2, which causes inflammation, another cause of cancer, which increases when you are overweight.

    As you can see, there are many low cost alternatives that fight cancer. I started my journey in August 2014- and I'm here over 2 years
    later- so like I said- don't listen to the doctor about dying.  Only God knows if we will live or die. Doctors are not psychics.

    You might want to meet with an integrative oncologist or naturopath.  I did many other things to fix all my problems; I am also on
    44 supplements each day, many that support the liver.

    You can read my whole story if you search "NED from Stage IV metastatic endometrial cancer"- my first post on Jan 10, 2016.

    Let me know if you have any other questions. 

    Takingcontrol58

  • Johns Wife
    Johns Wife Member Posts: 14
    edited December 2016 #3

    Diagnosed with HCC

    John's wife,
    Please take a deep breath. You have to approach cancer from a common sense approach.  I am from the uterine
    cancer board. I was diagnosed with advanced endometrial cancer Stage 3, Grade 3,  but had many liver metastases
    two months after my surgery, before I was to start treatment. I had a total of 34cm of tumors, besides the liver, they
    were on the spleen, outer rectum and I had nodules on my spleen, kidneys, lungs and outer colon.  Radiologist who
    did liver biopsy told my husband I had 4-6 mos to live my cancer was growing so fast. Do not listen to a doctor who
    tells your husband he has 6 mos to live. Doctors can be so insensitive.Ask you husband's doctor if he is a psychic.

    I worked with an integrative oncologist who put me on a drug called metformin. It is the most prescribed drug in the world
    for diabetes and insulin resistance(pre-diabetes).  It was discovered in 2005 that it has many anti-cancer properties that
    address all the processes involved in the growth and spread of cancer.  I was in total remission 6 months after going on this
    drug (I was considered prediabetic and had high levels of insulin growth factor-1, which fuels many cancers). I believe metformin
    worked on me because many of my risk factors were related to my broken metabolism - I was overweight, high cholesterol,
    borderline high glucose, borderline high blood pressure, high IGF-1 and high iron levels.

    The liver performs many functions in our body, including making glucose and storing iron, and also stores Vitamin D and B12. Low
    levels of Vit 3 can lead to cancer.  I don't know if you husband is diabetic or if he has any of the issues I mention above, but I would
    talk to your doctor about getting him on metformin- you may have to get your internist to prescribe the drug.  Most oncologists will
    not prescribe-there are numerous trials going on with this drug and all types of cancer.  I entered one of those trials but could not
    risk getting a placebo so I got my doctor to just prescribe it for me.  It is a generic drug and very cheap. After one month on metformin,
    88% of all my tumors vanished without any surgery. I went from 34cm down to 4cm total.  The liver tumors were the first ones to go
    away completely. I believe the metformin helped me stop feeding the cancer.

    You might get your husband to test his ferritin levels as well since iron is stored in the liver (along with the spleen).  My levels were
    very high when my cancer metastasized. Every cell needs iron to divide and cancer cells are dividing very quickly. So I believe my
    high glucose and iron levels were one of the reasons my metastases went to my liver and spleen (where there was food to feed them).

    Also, if your husband doesn't have stomach issues, I take 2 low dose aspirins each day. It is well known to be a cancer preventative.
    It inhibits an enzyme called COX2, which causes inflammation, another cause of cancer, which increases when you are overweight.

    As you can see, there are many low cost alternatives that fight cancer. I started my journey in August 2014- and I'm here over 2 years
    later- so like I said- don't listen to the doctor about dying.  Only God knows if we will live or die. Doctors are not psychics.

    You might want to meet with an integrative oncologist or naturopath.  I did many other things to fix all my problems; I am also on
    44 supplements each day, many that support the liver.

    You can read my whole story if you search "NED from Stage IV metastatic endometrial cancer"- my first post on Jan 10, 2016.

    Let me know if you have any other questions. 

    Takingcontrol58

    I'm trying to breathe

    Thank you for responding!  He is on Metformin for diabetes, 1500mg per day. As far as Aspirin is concerned, they told him to be careful taking anything other than what is prescribed due to the effects on the liver by most pain medicines. In my heart, I know that God is in control of this situation, and only He knows when anyones time is up, but I so desparately want something to heal him and want him to be with us to see our son grow up. I will go to any length to make that happen for him.

  • tealnpink
    tealnpink Member Posts: 30 Member
    John's wife

    First, I'm sorry your husband has HCC. You can call anytimre. Nexavar (sorafenib) is chemotherapy in pill form. Please visit https://wexnermedical.osu.edu/transplant/liver give it a read then call them if your husband would like to apply. Their number is 1-800-293-8965.  I think James Cancer Center is a good place to go in your area because according to the internet they follow the mdanderson model. It is normal to have low platelets with liver cancer. I suggest you ask his oncologist "Why can't my husband have TACE treatments?" Low platelets is not a good reason to not get a TACE treatment because they can give platelets the same day as TACE as they do for my husband. I suggest you also ask his GI doctor "What is my husbands meld score?" If he is having ascites and is uncomfortable, ask his Dr. to schedule him for Paracentesis. Hope I helped. Ask anything you like.

  • Cris_617
    Cris_617 Member Posts: 16
    edited December 2016 #5
    This is good information

    Thank you for posting about metformin, supplements, platelets and meld score. 

    I stumbled upon metformin info and forwarded it to my husband's doctor. He wasn't aware of the metformin being able to stop metastasis. Nobody at all has ever mentioned his meld score. He was diagnosed last March, and we still have very little information. We are seen at Roswell Park cancer institute. I appreciate all the information.

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited December 2016 #6
    Liver Support

    John's wife,

    I take a variety of supplements that support the liver. 


    One of the best suplements is called Alpha Lipoic Acid. It is an antioxidant that enhances the
    effects of other antioxidants, including glutathione, which is vital to the liver.  It also boosts
    Interleukin-2, which boosts the immune system (many times cancer centers will give patients
    shots of Interleukin-2), and also fights neuropathy.

    You might want to look into this supplement for your husband. Supplements are vital to keep us
    healthy and replenish the nutrients our body is lacking.  I was put on this because of my liver
    metastases. The liver is our most important organ.  Another supplement I use for liver support is rosemary.

    Hope this is helpful.

    Takingcontrol58

  • Johns Wife
    Johns Wife Member Posts: 14
    LONG STORY

    So, My first post wasn't as lengthy as I'd liked, but I was pressed for time, so I will give more details now.  This all started back in September. My husband drank a little too much one evening and woke up the next day feeling poorly, he was nauseated and just generally ill, what we figured was a hangover. That lasted throughout the entire week, and sometime toward the end of the week, he began to turn yellow. We went to the ER at that point and he was admitted to the hospital. They discovered then that he tested positive for Hep C, which we were on the lookout for anyway, as he had been stuck with a dirty needle at work a few years ago. They were working on getting treatment for that, and thats all we thought it was.  The jaundice got worse and worse, and he was hospitalized again in the next few weeks. this time, they did a CT scan and said they believed he had Choleangiocarcinoma, they transferred him out to OSU in Columbus Ohio.  He spent 10 days there, they placed a stent in his bile duct to drain the bile and ease the jaundice. The biopsies they got (twice) from the bile ducts, came back as only dead cells. They did an MRI and saw a small lesion on the liver itself, the bile duct was clean. We got that pathology last week, and at that time was told it was HCC, and had spread to the lymph node near the liver. That is where we are now. They have offered him Nexavar as treatment, but say that he is not a candidate for TACE or RFA.  I have researched all weekend on other things to help, cannabis oils, getting the body in an Alkaline state, B17, and more.  I am just trying to do anything to give him a better chance.

  • Johns Wife
    Johns Wife Member Posts: 14

    Liver Support

    John's wife,

    I take a variety of supplements that support the liver. 


    One of the best suplements is called Alpha Lipoic Acid. It is an antioxidant that enhances the
    effects of other antioxidants, including glutathione, which is vital to the liver.  It also boosts
    Interleukin-2, which boosts the immune system (many times cancer centers will give patients
    shots of Interleukin-2), and also fights neuropathy.

    You might want to look into this supplement for your husband. Supplements are vital to keep us
    healthy and replenish the nutrients our body is lacking.  I was put on this because of my liver
    metastases. The liver is our most important organ.  Another supplement I use for liver support is rosemary.

    Hope this is helpful.

    Takingcontrol58

    Thanks

    I will look into all of them!  Are all of these safe for someone with liver cancer? I am just weary of giving him something that make him worse.

  • Johns Wife
    Johns Wife Member Posts: 14
    edited December 2016 #9
    tealnpink said:

    John's wife

    First, I'm sorry your husband has HCC. You can call anytimre. Nexavar (sorafenib) is chemotherapy in pill form. Please visit https://wexnermedical.osu.edu/transplant/liver give it a read then call them if your husband would like to apply. Their number is 1-800-293-8965.  I think James Cancer Center is a good place to go in your area because according to the internet they follow the mdanderson model. It is normal to have low platelets with liver cancer. I suggest you ask his oncologist "Why can't my husband have TACE treatments?" Low platelets is not a good reason to not get a TACE treatment because they can give platelets the same day as TACE as they do for my husband. I suggest you also ask his GI doctor "What is my husbands meld score?" If he is having ascites and is uncomfortable, ask his Dr. to schedule him for Paracentesis. Hope I helped. Ask anything you like.

    Thank You

    I will definitely read it!  I asked yesterday about TACE, their only answer was that because they belive it has already spread to the lymph node near the liver.

  • Johns Wife
    Johns Wife Member Posts: 14
    tealnpink said:

    John's wife

    First, I'm sorry your husband has HCC. You can call anytimre. Nexavar (sorafenib) is chemotherapy in pill form. Please visit https://wexnermedical.osu.edu/transplant/liver give it a read then call them if your husband would like to apply. Their number is 1-800-293-8965.  I think James Cancer Center is a good place to go in your area because according to the internet they follow the mdanderson model. It is normal to have low platelets with liver cancer. I suggest you ask his oncologist "Why can't my husband have TACE treatments?" Low platelets is not a good reason to not get a TACE treatment because they can give platelets the same day as TACE as they do for my husband. I suggest you also ask his GI doctor "What is my husbands meld score?" If he is having ascites and is uncomfortable, ask his Dr. to schedule him for Paracentesis. Hope I helped. Ask anything you like.

    Also...

    Also, how long since the diagnosis of HCC in your life?

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited December 2016 #11

    LONG STORY

    So, My first post wasn't as lengthy as I'd liked, but I was pressed for time, so I will give more details now.  This all started back in September. My husband drank a little too much one evening and woke up the next day feeling poorly, he was nauseated and just generally ill, what we figured was a hangover. That lasted throughout the entire week, and sometime toward the end of the week, he began to turn yellow. We went to the ER at that point and he was admitted to the hospital. They discovered then that he tested positive for Hep C, which we were on the lookout for anyway, as he had been stuck with a dirty needle at work a few years ago. They were working on getting treatment for that, and thats all we thought it was.  The jaundice got worse and worse, and he was hospitalized again in the next few weeks. this time, they did a CT scan and said they believed he had Choleangiocarcinoma, they transferred him out to OSU in Columbus Ohio.  He spent 10 days there, they placed a stent in his bile duct to drain the bile and ease the jaundice. The biopsies they got (twice) from the bile ducts, came back as only dead cells. They did an MRI and saw a small lesion on the liver itself, the bile duct was clean. We got that pathology last week, and at that time was told it was HCC, and had spread to the lymph node near the liver. That is where we are now. They have offered him Nexavar as treatment, but say that he is not a candidate for TACE or RFA.  I have researched all weekend on other things to help, cannabis oils, getting the body in an Alkaline state, B17, and more.  I am just trying to do anything to give him a better chance.

    John's wife,

    John's wife,

    A great book to read is Natural Strategies forCancer Patients, by Russell Blaylock.
    You'll learn all about various supplements and what they do well as wellas about diet and boosting
    your immune system.

    I took the Alpha Lipoic Acid and Rosemary while I had liver metastases and remain on these
    supplements today, nearly 2 years later.  When cancer cells die, all those toxins pass through
    the liver so you have to detoxify the liver.  I also drink a glass of water with 1/2 squeezed lemon
    each morning-it is a good way to detoxify your liver and makes the body more alkaline.

    I would suggest you take your husband to meet with a naturopathic doctor who can put him on all the
    supplements that he might need - and do blood tests to see what vitamin and mineral deficiencies he
    might have.

    Takingcontrol58

     

  • Johns Wife
    Johns Wife Member Posts: 14

    John's wife,

    John's wife,

    A great book to read is Natural Strategies forCancer Patients, by Russell Blaylock.
    You'll learn all about various supplements and what they do well as wellas about diet and boosting
    your immune system.

    I took the Alpha Lipoic Acid and Rosemary while I had liver metastases and remain on these
    supplements today, nearly 2 years later.  When cancer cells die, all those toxins pass through
    the liver so you have to detoxify the liver.  I also drink a glass of water with 1/2 squeezed lemon
    each morning-it is a good way to detoxify your liver and makes the body more alkaline.

    I would suggest you take your husband to meet with a naturopathic doctor who can put him on all the
    supplements that he might need - and do blood tests to see what vitamin and mineral deficiencies he
    might have.

    Takingcontrol58

     

    Slowly figuring this out

    Thank you for the advice! We are slowly figuring this out, with the help of all of you. I have been reading a lot of information about getting the body in an alkaline state to help slow or stop cancer in it's tracks all together. Has anyone else seen this research?  We are adding as many high alkaline foods as we can as well as alkaline water. We are going to start some supplements next week.

  • tealnpink
    tealnpink Member Posts: 30 Member
    edited December 2016 #13
    Clinical trial

    If it has spread to his limp mode I would suggest you ask if there is a clinical trial he may be eligible for. I think OSU has several liver trials that are recruiting.

  • Johns Wife
    Johns Wife Member Posts: 14
    We go next week to discuss

    We go next week to discuss clinical trials

  • Plumeria45
    Plumeria45 Member Posts: 2
    edited December 2016 #15
    Liver ablation

    My husband has just got liver ablation they microwave the tumor no chemo no radiation just laperscopic baby cuts to get to liver and microwave you need a radiologist specialist hope that helps

    Mexico clinics have been treating cancer for many years with good success many patients combine traditional and alternative that is what my husband is doing no chemo he wants to enjoy what ever time he has left as healthy as possible  

  • Jacqbur7
    Jacqbur7 Member Posts: 2
    edited January 2017 #16

    I'm trying to breathe

    Thank you for responding!  He is on Metformin for diabetes, 1500mg per day. As far as Aspirin is concerned, they told him to be careful taking anything other than what is prescribed due to the effects on the liver by most pain medicines. In my heart, I know that God is in control of this situation, and only He knows when anyones time is up, but I so desparately want something to heal him and want him to be with us to see our son grow up. I will go to any length to make that happen for him.

    My husband has stage IV Liver

    My husband has stage IV Liver cancer which has mestaticized.  he is currently on Nexovar.  He has lost quite A bit of weight And muscle mass.  His appetite is ok, not really drinking enough but now has started to hallucinate.  I feel so helpless and sad for him.  I was told 6 months and although I am preparing for the worst I'm still praying for a miracle.  I know that God has him regardless. 

  • Johns Wife
    Johns Wife Member Posts: 14
    Jacqbur7 said:

    My husband has stage IV Liver

    My husband has stage IV Liver cancer which has mestaticized.  he is currently on Nexovar.  He has lost quite A bit of weight And muscle mass.  His appetite is ok, not really drinking enough but now has started to hallucinate.  I feel so helpless and sad for him.  I was told 6 months and although I am preparing for the worst I'm still praying for a miracle.  I know that God has him regardless. 

    I'm so sorry, I know what you

    I'm so sorry, I know what you are going through, and I feel your pain.  The only thing I can say to you is this, pray. Have everyone you know pray. Change his diet, ASAP. Get rid of all sugar and meat. Try to get him to eat as many green veggies as you can. Lok into Apricot seeds, many don't believe the science behind them, but I do. My husband is taking Nexavar as well and he is doing ok with it for now. We are supplementing the apricot seeds and forcing lots of veggies as well.

  • Mike5072
    Mike5072 Member Posts: 12
    edited January 2017 #18
    TACE and RFA

    i have HCC and was diagnosed two years ago.  I've had 5 TACE treatments and 1 RFA for treatment of 3 tumors in the center of my liver and 1 on top pressing against my diaphragm. I've also used nexavar for 10 months but stopped because I just couldn't tolerate it. I get my treatment at the Upstate Hospital in Syracuse.  I don't understand why your husbands tumors can't be treated with one of these procedures even if they said it has spread.  Have you gotten other opinions.  I know it's difficult to know what to do and what to think.  

    Goodluck to you and your husband.

  • Fortie
    Fortie Member Posts: 7 Member
    edited February 2017 #19
    Johns wife, how is your

    Johns wife, how is your husband doing on the Nexavar? My husband has been waiting since november to get into a clinical trial at Georgetown. His last lab showed his liver function has started declining so the oncologist decided to put him on Nexavar. He ended up in the ICU on his first day of taking it. He is still at the hospital with breathing difficulty and edema in both legs. They doubt the Nexavar caused it so they are restarting him on a lower dose. I am beside myself with worry.

  • sherry123
    sherry123 Member Posts: 26
    edited February 2017 #20
    Fortie said:

    Johns wife, how is your

    Johns wife, how is your husband doing on the Nexavar? My husband has been waiting since november to get into a clinical trial at Georgetown. His last lab showed his liver function has started declining so the oncologist decided to put him on Nexavar. He ended up in the ICU on his first day of taking it. He is still at the hospital with breathing difficulty and edema in both legs. They doubt the Nexavar caused it so they are restarting him on a lower dose. I am beside myself with worry.

    Eat well and sleep well, check newly started medication

    I always suspect Cancer is a hoax created by a strange medical system in North America. Doctors are in too much power in this political system. Why people just cares about more insurance, this just give doctors more money instead of any help with improvement of health care quality. Doctors are self employed, people's life is true comodity. Whenever there's a medical mistake, the hospital just say "Talk to the doctor", the doctor manages himself.

    Some people says cancer is caused by metabolism problem, make cancer cells over grow. I think it's very important to eat well and sleep well. Eventually you count on your body to go back to balance itself. I believe some medicine make it worse (I don't mean you shouldn't take medicine doctor give to you), that's why cancer patients is in such a bad cycle. Some patients don't even have cancer, but cancer is just a disease so easy for doctors to make money. It's unknown, doctor don't have any responsibility. Pay attention here, they say it's unknown, instead of I don't know. Why we allow doctor to earn money when he don't know what he's doing?

    Maybe you can try take you husband to a metabolism doctor, better in another hospital. One doctor won't tell you he knows another doctor made a mistake, especially if they are in the same hospital. But you have to let the doctor in the other hospital knows all the medical records in the past. It's depends on how responsible the doctor is, some doctors never check medical history to see what's happening, even they can. It's just too easy for doctors to make money and excuse any mistakes.

    It may just caused by a small thing, a medication change, or a life style change. Some medication change won't show side effect immediately, it's gradually, may take a few months or years before show the problem. Think about when you husband's problem started, research all new medication your husband started before that. Any disease has a cause, if you don't have it in the past. Don't wait until it's too late to figure it out.

    Doctors probably only knows 60% if a medicine will work on you, people has different body type, a medicine works differently on different people. The doctor is not living with you, you have to tell him everything to give him clue to figure out what cause your problem. They have to observe if a medicine is really good or bad on you, or you have to monitor it yourself. It's so bad doctors are not staying in any hospital, they only come to you a few minutes even when you stay in hospital, so basically no professional is monitoring the patinent, It is just too easy for doctors to make money, because most patients don't have enough knowledge to monitor the quality of their health care, neither the health care system can. Some medicine after start it, you'll rely on it all your life no matter good or bad, pay the doctors all your life. That's how Syroid hormon becomes the most popular medicine in America.

    Why America can not have doctors as permanent employees in the hospitals, has base salary (so they don't have to make money from patients) and earn less by treating patient (so we won't have greedy doctors, has more experienced doctors for they can't retire only after 15 years of practice), junior doctors will also be mentored by expert instead of gain knowledge from making mistake on patients, or never gain enough knowledge.

    The doctor only need a couple hours in a hospital a day, a few minutes for each patient. How much money doctors get paid for the few minutes, how much care patients get. And politician says, more people need medical insurance to be fed into such hospitals. At least 3 nurses told me, when they get sick, they'd rather died at home instead of going to the hospital.

    I think many of the cancer patient doesn't have disease unknown, the problem is the system can't find a doctor who knows how to treat of this kind of disease, even you can find the doctor, the doctor may not accept patient, or your insurance only pay for bad hospitals. I met an old lady, she got her breast cancer cured, she said there's a book of best doctors in America, she found the doctor in the book, and her son is a doctor, he managed to find someone graduated from the same university with the doctor, so the doctor accepted her as a patient, she get cured. But most of us won't has this fortune, so we only end up to be treated by a doctor only know this disease is unknown to him, and call it cancer. Look at Obama care, is that for any benefit of the patients? It's for sure benefits hospitals, you see all the hospitals are expanding, with many new nurses and doctors practice on patients.

    Hopefully the computer science will grow faster to make computer replace more diagnose work doctors doing, it can give people more affordable, fair care. Just like what's happening internet do to the lying media. When some people in too much power, they may think they can fool the public.

  • Academy
    Academy Member Posts: 1
    so sorry to hear your husband

    so sorry to hear your husband has hcc cancer. My husband passed away after 16 mo the diagnosis. The cabozantinib trial bought him about 5 extra months. He tried everything to stay alive. I'm afraid that there is no walking away from this disease. I'm so sorry