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Any survivors willing to call me? Please Please help me save my husband

dvmendoza
Posts: 12
Joined: Feb 2012

My husband has been diagnosed with primary, traditional HCC (no cirrhosis), stage 4. The CT scan indicates he has numerous tumors of varying sizes throughout his liver. There is one tumor on his abdominal wall so they consider this spread. They have told us that he should take nexavar and/or join a trial. Those are the only options given to us so far out of Northwestern Memorial Hosp in Chgo.

If you are a survivor, are you wiling to talk with me by phone?
Dori

mhrosado
Posts: 37
Joined: Jan 2011

Hi Dori - hope that you are getting responses to your request. my husband was given Nexavar for a short period of time but it had to be stopped because his liver was to weak to take it. what's worked for him is the chemoambolizations. he's gone through 2 of those and now the tumors are gone. His liver is still weak so we are not out of the situation completely. Ask about TACE and Y-90 therapies and go with what you think is best. i don't know enough about your situation or about the condition itself to give you better advice. i would tell everyone to watch your nutrition, don't eat meat and take a nutritional shake but above all be strong and pray. stay connected.
maria

northa914
Posts: 90
Joined: Mar 2011

Hi Dori,

While I don't have primary HCC, I do have stage IV cholangiocarcinoma with mets to my liver and spine. At this point, my oncologist and surgeon are treating my liver for the numerous lesions I have. If you feel it would help, please send an email to andreanorth@loopmastersinc.com. I'd be happy to give you a call and let you know what my current treatments and status are. Hang in there, when you're given a stage IV diagnosis it's hard to pick yourself off of the floor and catch you breath. We're all individuals, if we were statistics than I would have gone into the light by now. I was diagnosed in June of 2010 and am doing (as my doctors would say) remarkably well considering I have a chemo-resistant cancer. Take care.

Andrea

hopeful husband
Posts: 5
Joined: Apr 2012

Greetings for Easter week to everyone who is sharing. I am addressing this to Ms.Andrea North who reported that had cholangiocarcinoma since June 2010. My wife was recently diagnotsed with the same. Volumetric analysis indicates over 70% of the liver have been infected. MRIs biopsies and PET Scan confirm the findings. Indeed we were advised that there is no specific chemo therapy that works on CC but your report seems to indicate otherwise. My wife will start her FolFox treatments this coming friday at the Dana Farber in Boston. May I contact you via your email? Mine is arlaba2007@gmail.com. I am prepared, in case the chemo therapy does not work, to go to alternative medical treatments and modalities. I have considered as options: St.George Klinik in Germany with Dr. Douwes, Paracelsus in Switzerland with Dr. Rou and the combined East/West treatments at modern hospitals in Guangzhou China (Fuda and Guangzhou Modern hospital) I am in fact meeting up with one of the radiologist/oncologists from China who was trained in Spain for Masters degree in Medicine. I am not giving up hope at all. But I am not too confident with conventional treatments as all my readings seem to confirm the prognosis of the first two highly experienced doctors who diagnosed her disease last January: fast acting, late stage, no chemo agent works, if any does it will only be short term, go for quality of life more than survival rate, due to the size of lesions and metastatic features no hope for liver transplant or even resectioning, no hope for SIRT of radioactive pellets, no hope for Proton beam or any form of radiation therapy. Please help me understand and know what your doctors did to keep you alive and I assume well enough to write back after nearly 2 years from the time they discovered your condition. I shall email you separately in case you do not get to read this message. To all others seeking help and wish to consider alternatives, let me know where I can be of help. Thank you all! Tony Hopeful Husband

northa914
Posts: 90
Joined: Mar 2011

I just sent an email to the address you listed in your post. You may want to check your spam file in case my adress wasn't recognized. If you didn't receive it, please email me at andreanorth@loopmastersinc.com and I'll resend it to you or cut and paste it to this site. :)

Andrea

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Dear Dori,
So sorry you and your husband have had this news. My husband also has stage 4 liver cancer, although it is a different type than your husband's. The statistics are not encouraging, but you must not let chaos and despair take over. Although your husband's cancer may not be curable, it can be managable. I would suggest a second opinion as soon as possible. Not that your doctors and hospital will not do the best they can, but I believe in getting a second opinion no matter what treatments have been offered. You and your husband need to be in control of his treatments. And need to be able make informed decisions. I do not believe that there is only one treatment for cancer and you need to confirm this protocol with other doctors. I do not know Northwestern Memorial, but I would suggest that you visit the largest comprehensive cancer center in your area, and get with the team approach, where a team of doctors work together to make treatment protocols for your husband. Take care, Dori, and good luck and may God bring you peace. Come back again and let us know what you decide.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Andrea: I have one met to the liver (2 cm) as well as to the peritoneum from gallbladder cancer diagnosed January 2010. The liver met hasn't grown much since it was first detected and the peritoneum cancerous nodules (6 of them) have been stabilized by chemo. I had surgery April 2010 to remove my gallbladder, its tumour, and part of my liver but no one seemed to do anything about the met on the liver even though it was identified on a CT scan done several months before the surgery. Since then I've had two rounds of chemo (cisplatin + gemcitibine for 12 treatments; oxaliplatin + irenotecan + 5FU pump for 12 treatments) which worked to stabilize the peritoneum nodules. The liver met has grown a little.
I met with the oncologist today to see where we go from here. Given that the met to the liver is so small, I was sure he'd offer surgery to remove it so I can get the peritoneum stripping surgery. Much to my surprise, he said, nope, not likely, no surgery as there are already mets to the peritoneum. So I was surprised that your liver lesions are being treated surgically. I'm in Canada so that may be the reason! They tend to write you off with mets.
Can you give me more information?
Cheryl

northa914
Posts: 90
Joined: Mar 2011

Hi Cheryl:

The type of surgery I’ve had is TACE (Transarterial Chemoembolization), where chemotherapy drugs are dispensed via a catheter that is inserted directly into the liver as close as possible to the tumor(s) being treated. The catheter is placed into the femoral artery, then passed through the hepatic artery into the tumor(s) arterial system. Once in position, chemo drugs are fed into the liver, then the arterial system is “plugged up” with an embolizing agent. This allows the tumor to be more directly treated for a longer period of time, and also starves the tumor of part of its blood supply. Individuals who aren’t able to tolerate such a direct dose of chemo sometimes are treated with the embolization only. From my understanding, TACE is used against primary HCC, metastatic gastrointestinal cancers, and certain other metastatic cancers. I’ve had four procedures so far, the last being on January 27th of this year. My first was on December 14th of 2010. In actuality I wasn’t a likely candidate due to the number and size of my metastatic liver lesions, but the surgeon who reviewed my case decided it was worth a try and so far we’ve been successful. I think part of the reason he gave me a chance is that I was in relatively good health in spite of the cancer and my liver was and continues to function normally. I did have a problem with my insurance company when my primary oncologist requested a consultation for TACE, but not because they declined the procedure. They kept authorizing appointments at facilities that didn’t perform TACE, and the facilities I asked to be sent to weren’t on my insurance company’s approved list. After two months of the runaround, I was finally allowed to go out-of-network, and am now being seen for special procedures at USC-Norris in Los Angeles. My liver lesions were initially deemed unresectable; however, my surgeon now says that I’m doing “remarkably well”, and he’s thinking that if we can shrink the tumors enough with TACE and perhaps RFA (burning the lesions from the inside out, as opposed to treating them from the outside in as is the case with TACE) he may be able to resect. Have you gotten a second opinion about the liver lesion and options for treatment, or is this also a problem for your insurance company? My lesions that are being treated were much larger than yours (5cm to 8.3 cm), and I have quite a few (infested is a fitting description).

I hope this helps. If you want to chat further about this, please feel free to email me at the email address I listed in my previous post. I’m more than happy to give you whatever information and support you need!

Andrea

CrazywithFear19
Posts: 5
Joined: Apr 2012

Hi, I am new to this site. My fiancee has just been diagnosed with advanced cholangiocarcinoma and was told that life expectancy is around 6 months. This has been such a shock to us as he has always been diet conscious and an exercise freak. He has always been in good health and looks younger than his actual age of 50. Both of us were going to get married later this year and this has been such a shock to both of us.

I have been going crazy with fear and my emotions have been on a non-stop rollercoaster of fear, depression, anger and grief. He will be seeking a 2nd opinion in Anderson MD and I am fearful that they will say that nothing can be done. His first report in El Paso stated 75% of the right lobe of his liver is infected with numerous cancer cells and that there is a big tumour of around 5 cm. It also stated that his bile duct is infected but it is unsure if his pancreas is infected. The oncologist in El Paso said that it was not operable and referred him to MD Anderson.

I don't know how to deal with this and I keep thinking of the numerous possible outcomes, which not a single one is good. Meanwhile, it is painful to watch him suffer abdominal pain, loss of appetite, fatigue and resignation of his impending doom. I keep hoping and praying that something can be done instead of dreading the death sentence in 6 months.

Please help!

Debbie

sagepatty
Posts: 2
Joined: Nov 2012

Hi my name is Patricia Moreno. My husband Antonio Moreno was diagnosed with liver Cancer. He never stopped drinking, and he was already tired of all the pain that this thing caused him throughout the years. He was my ex husband. On the 8th of October we got remarried by the Deacon that gave him his last rites.....he was so happy and we also took him home on his wishes and put him on Hospice....My life without him is sad and I am so tired of crying for him. Just my advice to you is to keep on going, dont stop and love eachother each and everyday,,there is a God and he can provide you with a miracle. And if this is not in the book for your fiancee, just thank God that he doesn't suffer . My husband lost his short but courageous battle with live Cancer.oN the 11th of October 2012..May you rest in peace my love,,,...Take care and God bless us all..Patricia Moreno

blueheaven56
Posts: 18
Joined: Dec 2011

I am not familiar with the hospital you mentioned in your post. I did google them up and copied the following information from Northwestern's own web site.

Liver Cancer Clinic & Treatment Options
Treatment of liver cancer requires a comprehensive multidisciplinary clinic dedicated to evaluating patients with hepatocellular carcinoma. These patients meet with physicians from transplant surgery, hepatology and interventional oncology to devise a course of action that includes a variety of treatments individualized for each patient. The potential therapeutic options we offer include:

Resection
Radiofrequency ablation
Transarterial chemoembolization
Transarterial drug-eluting beads
Transarterial radioembolization Y90
Combination therapy with RFA+Y90

You need to ask them to give you an explanation as to why he does not qualify for one of the liver directed therapies listed above. If you don't ask, they won't necessarily tell you. If you don't get the answers you need, find another center that has liver services. GET ANOTHER OPINION. Many times, they can talk with you by phone and give you a lot of information. I'm sure there are other medical centers that have a liver specialty since you live in the Chicago area. You can also contact Johns Hopkins in Baltimore, Md and have them review his case.

In my husband's case, I have talked with University of Pittsburgh, University of Maryland, Cleveland Clinic and Johns Hopkins. I live in Baltimore and he currently goes to the VA and University of Maryland for care. He has no lesions (that we know of) outside his liver. He has plenty of lesions infesting his liver. He still has the potential to be listed for a transplant if all the tumors get zapped with the Y-90. I wanted to make sure we had all our bases/options covered. All of the hospitals I mentioned earlier have told me the same thing...his current therapy (Y-90) is what they would do first and that they would review his records after his 2nd treatment and he has a follow-up MRI.

Each of the hospitals I mentioned were very helpful and informative.

dvmendoza
Posts: 12
Joined: Feb 2012

I will ask about why my husband is not eligible for the list of options on the website. Thanks, Blueheaven. I will also ask about whether he is eligible for a liver transplant.

Right now, we have signed up for a trial involved taking both Nexavar and Torisel. They are both targeted therapy drugs, Nexavar for liver cancer and Torisel for renal cell cancer. It is hoped that Torisel will make Nexavar more effective in prolonging life. Torisel is taken as chemo to the vein once weekly and we will start Nexavar this Wednesday.

Anyone else in a similar study?

God bless you all for responding and providing advice. I feel so helpless.
Worried Wife

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Hello!!! My name is Barbara and I have angiosarcoma of the liver...9 years ago, they gave me three months to live..This cancer not treatable other than hit and miss options..is a very rare form of liver cancer..I have never drank or smoked..Keep the FAITH!! Never give up hope. I Had RFA done on several lesions..It is still there, but not growing and hasn't in 4 years...God said He would heal me and I believe Him..I'll be praying for both of you...In Gods Love Barbara

arivera1
Posts: 3
Joined: Mar 2012

Hi. I lost my mom to liver cancer four years ago. Now my brother has been told he has several masses on his liver. I have lost all hope because my mom died and I'm scared he will have the same fate. I ran across you on the CSN. Would you be so kind to guide me in some ways as far as treatments?

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

i had RFA (radio frequency ablation) done in Cleveland, Ohio at The Cleveland Clinic... Worked wonderful for me.. I would suggest to anyone with liver cancer to check this option out with their doctor or even a 2nd or 3rd opinion. RFA is also being used on lung and other types of cancer now.RFA is overnight stay in hospital and back to work in a few days.. Any Questions, please ask...
In Gods Love....Barbara

MrsTigger
Posts: 14
Joined: Mar 2012

Sorry it got posted more then one time

MrsTigger
Posts: 14
Joined: Mar 2012

Hey Barbara my name is Shay! My dad was told April of last year that he has hcc as well they told him that only treatment out there for him was nexavar! However he can not take the full dose of it cause it made him sick! I'm not sure if his Dr knows what he is doing or not! He doesn't seem to answer many questions I ask! If I can get some advice to help my dad It would be very appreciated. I am 34 years old and trying to do everything I can do to help him and my mom out! I live in South Carolina. Anything from anyone would help. Not sure of a lot of questions to ask the Dr either. My dad has hcc with spots on his spine that came from the liver as well. He doest have hepatitis nor is he a drinker! Thanks for anyone who can help!

MrsTigger.

dvmendoza
Posts: 12
Joined: Feb 2012

My husband is now past 4 weeks in the trial with Nexavar and Torisel. He got such a bad rash that they took him off Nexavar for a week. He's back on. I am happy to share what I have learned about this disease and what we are doing in terms of the trial and diet. He will be scanned in mid April to see if the tumors have stopped growing.

dvmendoza@sbcglobal.net

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

offutt9's picture
offutt9
Posts: 90
Joined: Jan 2004

Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

MrsTigger
Posts: 14
Joined: Mar 2012

Hello sorry took so long to reply back my dad had gotten sick and got put in the. Hospital yesterday. Been busy trying to help take care of him. I had asked my dads Dr about that and he said it would not work for him since he has 5 other spots thrum out his body. But then again I don't think his Dr really knows to much. The Dr said for hcc the only med out there is nexavar and there is nothing else they can do. I am trying to find him another good Dr close by where we live at. My parents are only getting SS ck so they don't have much money to travel on. Right now I am out of work as well due to a knee injury. We live close to Charleston SC. I heard there was some good Dr at Mayo clinic in Jacksonville Fla that is about 4 hrs from here plus my sister lives there. So I am going to try and get him there! Ive got to try and look all this up. Congrats hopefully it will remain away. I'm glad to hear good news. I'm going to let my dad know so he can get his faith back up. Thank you so much. Anymore info will be appreciated by my parents and I. Thanks again!

Sincerly
Shay.

kknearem
Posts: 2
Joined: Nov 2012

My wife also has lesions in both lobes, but after visiting MD ANderson for a 2nd opinion she was told that she was not a candidate for any treatment other than Nexavar. She does not wish to go thru the anguish just to add a few months to her life. How did your doctor come to the conclusion that RFA would be successfull?
we are pursuing alternative homeopathy, but are unsure of where to start.

hopeful husband
Posts: 5
Joined: Apr 2012

How old is your brother? Have the massess been biopsied? And if so, are they malignant? Have they identified the primary type of cancer? Do review our posts in this CSN site and contact me or even ms andrea north who has been extremely helpful. This network "empowers" both caregivers such as yourself and the patients not only to know what we are all dealing with but we can compare, make choices and have the flexibility nowadays, not just rely on one or two opinions of doctors who can also make mistakes or at the very least are not infallible. It is prudent to research and to know exactly what your brother really has and what the alternatives are because each case is different and will have to be handled differently. As one of our doctors said, a national scientist/gastroenterologis, medical science today has improved a lot but it is still not an exact science...they often go with "probabilities". Good luck and our prayers for all in this network and those who have yet to discover its wonderful sharing and giving of information from those who seek and those who share.
Tony

NapcofinSelina
Posts: 3
Joined: Aug 2011

Oh, I am sorry to hear that. Hope he will get better soon.

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Coming to the styles, there are many corsets that come with g-strings. However, if you find them too revealing,corsets can be teamed with a pair of sexy panties. Another addition could be garters that can help you combine the sexiness with thigh highs. Overall, it's all about what makes you look sexy and comfortable, and you must go for the one that fits you well as well as makes you look appealing.

Carol20
Posts: 3
Joined: Oct 2012

Thanks for your amazing story and will to live! I am a cancer survivor and ER nurse and ski patrol. I had early breast cancer and now have what were blood blisters on my breat. I hike a lot, do aerobics, Zumba but am wondering? I sent a picture to my doc, then will consult his father my breast care doc (surgeon and the whole 9 yards, breast specialist). Unfortunately the watch and see plan does not work with angiosarcoma. Hopefully it is nothing, but, it should raise suspicion since I had radiation of the breast mammosite near by. Carol20

Carol20
Posts: 3
Joined: Oct 2012

What I mean was, it could have been my bra causing the lesions in all that vigorous activity. But, never got them from that before? My OBGYN said see a dermatologist, not a cancer doc. ??? I would want a proper biopsy that does not expose the rest of my body to it, etc. Not all providers do this? Just have to plod along and find someone. I wish I was in Boston at Women's and Children's Hospital because of the literature I have seen in the scientific journals from there. I am now on the West coast!

march00
Posts: 20
Joined: Sep 2011

Hi, what are they going to do for him?
Nick

cnatekar
Posts: 1
Joined: Aug 2011

My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

Chetan

shinmin1500
Posts: 11
Joined: Jul 2012

My Husband was diagnosed with Liver cancer on June 11. When we have done biopsy on June 29, the doctors said there are multiple tumors (6cm,7cm and 12cm) in my husband liver and also spread to the liver. He has been so tired and lossing lots of weights about 40 lbs. he can not eat too much and it makes him full even he has small meals for 4 or 5 times a day. Gives him healthy food (orgainc) as much as I can. We have seen oncology doctor on 17th of July at SF General Hospital and planed to give my husband "Sorafenib" for two months. If this medicine works, he has 2 years to live and if not then he has only 6 months. He said no sign of cancer has spread to blood and other parts.

Do you know what are the side affect of sorafenib?

mek09
Posts: 1
Joined: Oct 2012

Hi cnatekar,

My father has been diagnosed with liver cancer and we found this out in august this year after a series of scans and blood tests. We have contacted the best liver cancer specialists and hepatologists in India and all of them are not able to help and say that disease is too advanced. He has been put off sorafenib too as his serum bilirubin has increased the prescribed values for sorafenib intake. His condition is degrading with loss of appetite with too much of weakness. Unfortunately, due to weak body resistance he has been catching infections and the abdominal troubles like indigestion worsens it all. He is 52 years old and we are based in Delhi, India. If you come across this post, please do help me by letting me know about the exact treatment procedure of your father's disease. Which homeopathy and ayurvedic medicine has your father been taking? Please do give me the details so that I can try all possible means to fight my father's illness. Also let me know where can I take him for treatment out of India and also within India.
My email address is meha09@gmail.com

kknearem
Posts: 2
Joined: Nov 2012

Can you tell me what remedies with he is taking - and how he is doing. My wife hes been diagnosed with Hepatocellular/Cholangiocarcoma, and has been told that Nexavar is her only solution - and that is not a cure. Traditional medicine is without answers, so we wish to go with alternative/homeopathic therapies. Of course, we ant to know what has worked for other folks.

nanajacksonx3
Posts: 8
Joined: Jan 2013

hoping your father continues doing well. Would like an update if possible. Dont know why but on these discussion boards, with the exception of some, most ppl only post for a brief period. updates would be helpful.

AIyer
Posts: 1
Joined: Sep 2014

Hi Chetan,

I have a similar situation with my father who is 69.

We are in the process to evaluate TARE Vs TACE Vs alternative medicine.

Could you share your experience?

Arun

hopeful husband
Posts: 5
Joined: Apr 2012

Hi Dori,
I can sense your panic. So yes, I am willing to share/talk with you about options. My wife was recently diagnosed with cholangiocarcinoma last February and started chemo treatments in Boston yesterday. Our 3 adult children are helping a lot in researching for options. You may contact me first via email at arlaba2007@gmail.com for some exchange that is not too open t the world to see. I can then give you my contact numbers if you and your husband wish to talk about the options we are aware of. Just to give you a quick rundown:
1. First, your options might be dictated by your financial situation. Do you have adequate insurance to cover all the anticipated costs? Does your insurance allow you to get treatments abroad? Will they cover alternative, non-conventional therapies? If not, do you have the financial flexibility to make choices or will you be limited travel wise and family situation wise by your financials?
2. Second, do you have a very clear idea of the exact prognosis on your husbands condition?
Did the doctors do an MRI, PetCt not just CT scan to see the extent of METs if any; did they do the biopsy? You have to have all the records intact because you may have to send them from one hospital/doctor to another if you are still on exploratory stage.
3. Third, if you know what you are dealing with and if you know your limitations or flexibilities i.e. family situation, financials, insurance, you can then proceed to look at several options:
3.1 resectioning/transplant...your husband's doctors will tell you if he is still qualified...but one of the CSN members Im in contact with forwarded to me a new method of liver surgery done by a doctor in San Diego. They take the liver out, remove the tumor while in a vat of cold water, put it back and thus avoid immuno suppresants. I can send you the link if you want to view it. my wife's liver could not be resected nor does she qualify for transplant.
3.2.radioactive pellets (SIRT)..they have to do an angiomapping to see if he qualifies...if yes, they will bombard the cancer cells hoping that at least 70% of the pellets go to the tumor sites. my wife dit not qualify for this also.
3.3 radiation therapy...there are severa i think one is IGRT.. the most sophisticated is the Proton beam...again the doctors will determine if your husband qualifies for this...again my wife's tumor had grown/spread to such an extent that this was ruled out, otherwise she could suffer a lot, maybe expire faster.
3.4 chemotherapy...this is where we see different approaches and medications. HCC might have more cases and more trial and error data with various chemo agents..unfortunately for my wife's cholangio the same cannot be said..
3.5 non-conventional...i have spoken with cancer survivors who went to St. George Klinik in Germany for hyperthermia treatments combined with chemo, i have resarched IPT or insulin potentiation therapy which is available in the USA but still not accepted by many doctors there due to various reasons, I have spoken with those who went to Paracelsus in Switzerland where we might bring my wife after her chemo treatments if we do not see enough progress or if her condition gets worse and I have spoken with many survivors who went to Fuda or Modern Cancer Hospitals in Guanzhou China where they employ both East and West treatment modalities.
3.6 The most important of all: Prayers and a Strong Will to live! I can tell you countless stories. Miracles do happen! And medical science cannot explain them except to give a term for the "suicide of cancer cells" in the same vein that they give a term for those who get cured during trial runs but did not use the drug under trial..i.e. placebo effect.

If you and your husband need to speak I can email you my skype name and my phone numbers. In Asia stem cells are also now being done but this will run up to as high as US$100th. Sadly, the doctors said that my wife's condition may not also qualify her for such. Despite all these negatives we have a strong faith and continue to be hopeful. Our prayers for your family.

Tony

Carol20
Posts: 3
Joined: Oct 2012

Can you elaborate on HCC of the liver, what the abbreviation means? Thanks, Carol

XtremediverHCC
Posts: 59
Joined: Feb 2011

HCC is an abbreviation of Hepatocellular Carcinoma, primary Liver cancer. I have been treated for it now twice in 6 years but still going strong.

GrayLady's picture
GrayLady
Posts: 1
Joined: Feb 2013

My husband had cirrhosis of the liver and developed nodes which turned cancerous.  They started him on Nexavar, but he broke out in terrible hives.  We agreed that this would not be a drug of choice.  He has since passed away lasat June 25, 2012.  He was on the liver transplant list at Richmond MCV with Dr. Fisher, the top surgeon.  He missed the window and was told sorry.  Dr. Fisher said, "I told you at the beginning only 30% of all people get transplants that it is a matter of luck and timing.  We missed the window.  He put us in Hospice and my precious husband made it 3 more weeks.  He had acites that were terrible and had to be drained weekly.  We chose to go to Lynchburg.  I loved them.  Radiology oversaw this and they were so easy to get to from Farmville.  I have only been able to write or talk about any of this just this month.  My husband and I had been high school sweethearts and 44 years of marriage. My heart goes out to all of you that are having to follow this path.  GrayLady

nanajacksonx3
Posts: 8
Joined: Jan 2013

As difficult as it is, you have shared your husband's story. That is progress and i thank you. god bless you Gray Lady! Joy

NatashaAttal
Posts: 1
Joined: Apr 2013

Hi GrayLady,

 

I'm so sorry to hear about your loss but happy that you are reaching out and offering kind words and support to others in this forum. I'm sure so many are very thankful for that!

My stepfather has been diagnosed with Stage 4 liver cancer and he also has a large tumor in his colon. He was given 3-6 months to live by his doctor which was 5 months ago. In that short time he has lost 50+ lbs and has no more appetite and lots of pain. I am heartbroken about potentially losing my stepfather as he has been in my life since I was 4 years old. I am also extremely worried about my mother. I'd love some advice from you on how to keep going after your loved one passes. I would like to be a source of support for my mom as much as possible and I'd love advice from someone like you who has been through it.

 

Thank you so much in advance for your words of wisdom. 

 

Best,

Natasha

cathyhd
Posts: 8
Joined: Sep 2004

I haven't been on this website for a long time.  Most of the time, I see that posts are 1-2 years old so I can't help much.  I can say that I have survived for 4.5 years so far in great condition.  I did catch it before it metasticized beyond the liver, but I have had a lymph node reoccurrence now and then.  

 

If anyone would like to see my detailed treatments and lessons learned, please see my info.  If you have questions, please contact me.  I don't know about some of the treatments that people have had to have due to bile duct blockage or tumors all over the liver, but I did have a very big tumor (though it was found to be less in surgery).  My location is near Dallas.  I have had experience with Methodist Dallas and MD Anderson (surgeon and radiologist).  I have not had experiene with an oncologist in either hospital.  Really like my local oncologist who was trained iat Chicago's best.

 

I am married now.  I had been the widow of a wonderful man who died from Mesothelioma for being around asbestos a short while in his young life.  He died at 54, 5 months after diagnosis.  I have had experience in being a caregiver of someone who knew beyond a doubt that there was no cure, no treatment, that could help him survive or extend his life much at all.  Talk about an emotional blow.  I did some awesome things, and I also have regrets and know now what would have been better for both of us.  We hit Memorial Sloan Kettering and MD Anderson.  Our experience at S-K was awful -- awful.  But I know some people have lived because of them.  

 

 

Annie_A
Posts: 3
Joined: Aug 2013

This is a huge inspiration Cathyhd.  My husband has been battling HCC since November of 2012 and when I read these discussion boards, I see people stop posting and I wonder if they passed, got better, got busy, etc. 

My husband is receiving treatment at Northwestern in Chicago.  He has had a resection with recurrence only 3 months after.  He has had 3 rounds of Y-90 and is now on his 3rd month of Sorafenib.  There are no new lesions and the lesions that were once in the liver are no longer visible.  He does have 2 lymph nodes that are enlarged; causing the team to be suspicious of recurrence to the lypmh nodes which is why the Sorafenib.  Sorafenib is really wearing him down though and I do not know how much longer he will be able to continue.  He has lost 30 pounds, his diabetes is uncontrolled, severe fatigue, shortness of breath, etc. 

In November 2013, I was cleared as his live donor for transplant but we are now playing the waiting game to see what is going to happen with these lymph nodes.  Up until we were treated by medical oncology, I loved the team at Northwestern, however, I am not happy with the choices of oncologists - we are on our 2nd one and I feel like my husband is being brushed off into the corner until he fades away.

I am considering taking him to another center and MD Anderson would be one of my choices.  We were at Mayo for a second opinion last fall (prior to Y-90 treatment) and I did like they doctor we saw there as well but he is not an oncologist.  UCSF has also been recommended.

I am desperately seeking information on how your LN recurrence was diagnosed and how it was treated.  Please message me when you get a chance.

 

kohsin
Posts: 27
Joined: Apr 2010

Try UIC medical Center. Dr. Jeung or Bui's dept. I have survived since 2010, after 2 treatment of Y90 and surgery removing my 9 CM tumor, I am into my 5th year w/o issues. Sounds like your husband's condition is unoperable. At least I think they treat me well.

Good luck!

Teresa706
Posts: 1
Joined: Jul 2014

Whatexactly is liver resectioning? Is it removing the tumor? My thirteen year old son just hot diagnosed withHCC. His doctors are hopingbst judres will take case because no logical doctors are experienced in pediatric liver resectiong...but is that a separate procedure from actually removing the tumor? Thank you. New to all this. And so scared for my boy

Shahid's picture
Shahid
Posts: 3
Joined: Oct 2014

It as you say,

to remove a section of the damaged liver

SumitKalra
Posts: 1
Joined: Aug 2014

My dad has been diagnosed with cholangiocarcinoma and he had acute jaundice which resulted in diagnosis of obstruction of bile duct and he had an operation to instill stents in his ducts to reduce his bilirubin level. We are now trying to understand what all our options are, his oncologist has told us that since he is 70 years old, surgery is not an option. We will take more options but wanted to check if anyone had faced similar options and what has been the outcome. I live in Boston area but as like of us, willing to do anything and everything to save my Dad's life and hence any/all suggestions/feedback is welcome.

 

Sumit

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