Topic: Hello All-Mom with Liver Mass

My mother who is 71 has been diagnosed with cholangiocarcinoma of the liver.  She has a 13 cm liver mass which is in the entire left lobe and partially in the right by PET CT.  She is on her 2nd cycle of 5FU, 48-hour infusion every 2 weeks.  They never found "the primary."  Other organs ruled out by blood tests, biopsy and scans.  So far, mets is only in the liver with maybe a spot on T8-9, but this is questionable and I hope that this is nothing since the lymh gland they thought had mets is now said to be inflammation from the liver pressing down on it.  Thankfully, all her other organs are working fine.

Initially, when we discovered this mass, Dec 7, 2006, I was anxious to do anything instead of sitting back and waiting for doctor appointments.  (Our first appointment was scheduled Dec. 17th with the general surgeon.)  I started my mother on the Essiac herbal supplement Dec 9th.  After 2 weeks on this, we did notice an increase in her appetite and a decrease in the stomach aches and pains.  She continues to take this daily.  She is very weak now and has had increased abdominal pain since the liver needle biopsy (Jan 5) and the initiation of chemo (Jan 23).

Like many of you, I have so many questions and so few answers.  Does anyone know a survivor with a mass this large?  Is is possible to shrink something this large for potential resection? Has anyone else had promising results on this supplement? or this chemo 5FU?  My mother asked, "how long do I have to live?"  The oncologist's "textbook answer" to a "textbook question" based on her labs and films is 7 months--well, that is now 6 months--time really does fly! 

My mother is a strong woman and does not want to leave us, yet.  We are struggling to get the 80 grams of protein and 80 ounces of water that have been recommended, but as you know, with no appetite and a strong desire to sleep, it is difficult.  Mostly, she manages to get 1/2 of them in or 3/4 on a good day.  Her ankle and knee have started to swell.  The oncologist said this is a chemo side effect.  Is the "cure" worse than the disease? I wonder, will it speed the process when it should slow it down?

At this date, I am waiting for a call back from John Hopkins concerning information about TACE/chemoembolization as a possible option.  I just don't have that much faith in 5FU, unless you can convince me otherwise.  I realize this is a grave situation by medical views, but we would like to "add time" with TACE if it is as favorable as it claims to be based on reports that I have read so far.  Does anyone have positive or negatives to share about this procedure? 

We remain faithful to continued prayer.  We are grateful for the opportunity to show our love and care for this wonderful person in our life.  We are taking advantage of the time we have, making sure she knows that she is loved and will be missed more than she can possibly comprehend.   

Thank you for listening, and for sharing any information about this.

Re: Hello All-Mom with Liver Mass

I have no advice to offer you friend, but I wish your Mother, and you and your family all the very best, and hope she keeps strong, mentally and physically.

Re: Hello All-Mom with Liver Mass

Bernie,

When you met with the surgeon, what was his advice on surgery?  I had a 10.5 cm mass taken out of the left lobe in May 2001 and have been on quite a few clinical trials and surgical procedures since then -- and am still doing reasonably well.  One trial which worked for about 16 months was on Oxaliplatin and Xelodia (which is 5-FU in tablet form)

I now have quite a few posts describing my experiences, and I think the easiest way for you to see them is through my list of posts to this Web site.  I believe if you click on my name you will get my profile, with the number of posts at the bottom of the page.  Click on it and the posts will be listed by forum.  You may want to scroll down to my Introduction to see my "history".   Also, you may want to note my comments on Medicare approving, or mostly not approving, treatments for cholangiocarcinoma.  That was a sobering and stressful experience for Seniors such as your mother and me.

I wish you all he very best.  Keep up the faith, and realize new treatments continually become available for this uncommon disease.

Jerry

Jerry

4 (edited by jules Thu, 08 Feb 2007 17:47:50)

Re: Hello All-Mom with Liver Mass

Bernie

I would reccomend seeking second, third, fourth, etc etc opinions on the surgical front if your mother is willing bearing in mind that this type of surgery is complex and risky.  You need to find someone highly skilled.  Ask them if they have done this type of surgery before and if they are prepared to operate when there is artery involvement - some are willing to proceed in this situation, others are more cautious.

My Dad had a resection to remove a tumor covering 75% of his liver - so yes, larger masses can be removed, the liver regenerates and will grow back.  This is a rare disease - beware of the gloomy statistics, we have learnt to ignore them - my Dad has lived long past all his expected 'depature' dates.  There are others on this site who also offer inspiration and hope. 

best

Jules

Re: Hello All-Mom with Liver Mass

Bernie,
I don't want to be a downer and I believe you should get hope from the other postings here and research your options --- yet:  my mother was in a similar situation to yours, and in hindsight I wish I hadn't dragged her to chemo. It weakened her immune system, gave her an infection so she wound up in the hospital, and did NOT give her the quality of life they assured me she'd have. She took Gemcitabine and Xeloda, only did two sessions in all. Everyone reacts differently so your mother may not have the bad side effects that mine did.  And the doctors kept telling us her disease was "stable" because of the chemo even the week before she died. They may have thought that because they're mindless chemo-pushers or because she had intrahepatic cancer so she was rarely jaundiced and never had any bile duct blockage or stents put in. She even had somewhat of an appetite up until the day before she died.  The week before she died, they wanted to try more chemo!! Both lobes of her liver were covered in countless tumors and they never pretended that chemo would do anything but stabilize or maybe shrink a few of the tumors to buy time, so it was considered "palliative."  I don't know if the chemo hastened her death or just did nothing at all, but she died 2.5 months after diagnosis so it couldn't have bought her THAT much time.
By all means, try everything you can for her, but if she's stage IV and is very tired and ill, sometimes it's kinder to call hospice and try to keep her as comfortable as possible. My mother wasn't ready to go, either - she had so much to live for, was only 64 years old -- and we always had hope and let her believe there was hope, too.  But she knew that time was running out, and taking her to doctors' appts exhausted her so much that I didn't have the heart to do it anymore.
There is no RIGHT answer with this disease, so please don't beat yourself up if you give up on chemo, and/or you decide to try some new treatments. Either way, you'll have used your best judgment and done the best for your mother, with love.
One more thing and then I'll stop my gloom and doom: you say your mother's ankles and knee are swelling, and that happened to my mother in the last two weeks of her life. By then the side effects of chemo had gone, so I think it was part of the disease process and not the chemo. Her abdomen was VERY swollen, too. But again, everyone is different and this disease progresses differently for each individual, so please don't put too much stock in what I say. I just feel so bad for you and the decisions you have to make and my heart goes out to you. If I had known my mother had such a short time left, I would have done so many things differently - but how can any of us know? There is always hope and there are always people who beat the odds or react well to certain treatments, so I'm not telling you to give up hope. I'm just saying that my mother's situation didn't turn out to be one of those miracle remissions we had wished for. I sincerely hope your mother is one of those amazing cases that DOES fight this cancer.
Maybe I shouldn't have written to you so soon after my mother's death - so take all of it with a grain of salt and please understand that my grieving is making me second-guess everything I did. You say that you're showing her all the love she's inspired and making known how special she is, and that's the most important thing of all. My thoughts and prayers are with you. - Joyce

Re: Hello All-Mom with Liver Mass

Thank you for your response and the advice.  It's all good!  I'd much rather hear it straight than to tell me what you think I want to hear.  Joyce, I am so sorry for your loss and the helplessness of it.  No one loves you like your Mom, I say.  I thank God that our memories do not leave with our loved ones who pass on, though I have faith that our love goes with them as they wait for us to follow.  Your Mom, I have no doubt, was grateful for you.  Your wisdom from this experience shines through.  I find my mom reaching to hold my hand often and I am so glad to be here for her.  Now, you're holding the hands of people like myself who are lost and looking for hope with this rare cancer. 

Mom had her 2nd 48-hour infusion of chemo.  She is sleeping a lot today.  We were at a disadvange during the 1st chemo cycle as she had an infection in her Mediport.  It was implanted on Monday and she had her chemo on Tuesday!  I thought she might get an infection after a few cycles--but NOT the 1st USE!  That Thursday, she had a fever, couldn't walk, and looked pale.  Her voice was soft and had trouble breathing.  We didn't know what was happening.  Was it the cancer, chemo, or was she dying?  Thankfully, the oncologist called us back quickly and even he was confused.  "5FU is gentle chemo and she shouldn't have this kind of reaction," he said.  His thoughts were either she was at "end of life" or she "possibly had an infection in the port."  He also said she was dehydrated and if we didn't get her hydrated by the weekend she would be in the ER.  Thankfully, the antibiotic he called in for us took care of the infection, and we were able to get her hydrated by the weekend!  She did not end up in the ER but improved with each day.  In fact, she had 4 awesome days of being her "old self," and that was great!  She was eating more, had more energy, and had a strong voice.  Hopes ride high when you get days like that and I hope there are still some coming! 

She slowly started to go down Friday night and stayed down until the chemo this past Tuesday.  However, the oncologist did say she would have a "wave" or "hill pattern" with this 5FU.  Technically, this will be our 1st real "dry run" of what we should expect.  She will have another cycle of it and an MRI to look for results.  That will be in March.  We are praying for great news as my parents 52nd anniversary will be on the 13th. 

I know that she gauges us just like we gauge her, so if I am down; she will be down.  If I don't keep believing, and stay optimistic, I am no good for any of us.  I also have my father to consider.  He is stressed and trying to "take charge of the situation," but honestly, he just cannot do it all--he's doing a good job, but he's not domesticated!  I'd give him an apron but I'm afraid he would use it to put duct tape in one pocket and a can of WD-40 in the other!  He has mastered eggs well, so Mom does get her protein for breakfast!  Mainly, I have to walk that "fine line" of being helpful without being intrusive in their marriage.  My father wants every minute he can with his wife, and I have to honor that.  I think we will know when it is time to call for Hospice care.  She is walking and able to dress herself, etc., so we are not at that stage.

If the 5FU does not show any progress, the oncologist did mention Gemcitabine as probably the next chemo to try.  I am not sure about that, surely, your mother's situation might be a warning sign for me and I will take that into consideration.  I have at least 4 more weeks to research. 

I believe, she will know when she has had enough.  We will support her decision as she knows what she can tolerate.  My prayer is, and has been from the very beginning, is to get this mass small enough for a resection as that seems to offer the best possible outcome though I know it is not without risks, too.  Of course, we're also willing to accept a miraculous dissappearing liver mass as well!

I feel your pain and I know you know where I am in this struggle.  Thank you for your support and sharing your mother's story.  We have been blessed with mothers who love us so much that we will never stop loving them. 

Many blessings to you!

Re: Hello All-Mom with Liver Mass

Dear Bernie,
Your response was so touching. I am so glad your mother and your father have you as support. I understand that you don't want to intrude on your parents' marriage - my mother was alone, as my stepfather died 4 years ago, so I was the one trying to make all the decisions (along with my sister, who lives further away). I hope your mother is continuing to do well. It's so frustrating to deal with the ups and downs of this cancer - my mother was walking (with help) and eating 2 days before she died, and we were under the impression that cancer victims wasted away slowly and weakened over time, which wasn't the case this time. Like I said, everyone is different.  Please keep us updated on your mother's story, especially if everything is going well!

Much love, much luck to you and yours.

- Joyce

Re: Hello All-Mom with Liver Mass

Dear Bernie,
I came down with bile duct cancer in November of 2005 at the age of 77.  Two-thirds of my liver was covered by a tumor.  After Four Months of Chemo the catscan showed the mass had disapeared. I had Yellow Jaundice until Dr. Schoenberger,of Lorain Community Hospital, inserted a stent in my duct tubes which allowed the bile to go into my digestive system.  I am given 200 MG of Gemzar and 1 MG of Decadron once a week. I have Chemo in series of Three Weeks on and One Week off. I wish your Mother well and hope she respounds to the Chemo Treatments.

Bob

Re: Hello All-Mom with Liver Mass

Thank you for your post, Bob.  I think it's too late for Mom to try this though I sure wish she could have had the opportunity as this combination has worked so well for you!  I hope you have continued success with your treatments and wish you all the best in your fight!  Thank you very much for sharing this with me. 

Joyce, I think of you and your mother often!  I am so confused right now, I'm not sure I know what to think anymore.

The 2nd cycle of 48-hour infusion of 5FU really took my mother down.  That was Tuesday, Feb 6th.  Since then, the decline in my mother's health has been so severe that like Joyce (jmoneypenny), I feel the chemo actually made her cancer worse, not better.  Her fluid intake was low and I called the doctor that was on call Sunday to see if there was anything we could do since my mother kept saying, "I think I need to go to the hospital."  He said there was nothing a hospital could do that we couldn't do at home ourselves and the only thing he suggested was for her to come to the office in the morning and they would hydrate her--"maybe that will provide some comfort."  My mother was not in traveling shape, so we had nursing hydrate her from the 12th to the 14th but it did not help much and even the nurse made the comment "hydration will not help you feel better."  I guess that's subjective, but it appears it has only bloated her.

On Feb 15th, Mom told Dad that she no longer wanted to take chemo and to cancel the next appointment.  My father had a lot of hope for chemo and was disappointed, but honored her decision.  I am glad she stopped the chemo as I know in my heart that it was making her worse.  When Dad called the oncologist he said that "in my experience with this stage of cholangiocarcinoma, chemo does not help much anyway."  He told us to call Hospice.  He said that based on her recent LFTs (liver function tests), she has about 2 weeks to live and the original prognosis of 6 months is not the case now. 

Hospice came on Saturday to discuss what they have to offer.  Hospice had the impression that Mom has cancer in the lungs.  This was "new news to us." I called the oncologist's office and the doctor said that their records indicated only cancer in the liver and possible T8-9 but not anywhere else.  He said maybe hospice nurse heard crackling or sounds in her lungs that made them suspect she had cancer in her lungs, but no one has listened to her lungs, yet.  The hospice social worker is the only person who has visited and her records reported lung cancer as well as the liver, which she said she got from the oncologist's office "or you told us that."  I told her I had no reason to tell her my mother had lung cancer because it has never been mentioned to us!  I can't believe PEOPLE!  How frustrating it is that all these laws concerning access to your medical records and making sure you list the people you want to allow access to get them for the protection of the patient and yet, I've requested and my father has requested Mom's medical documents at least 4 times between both of us and we still don't have them!  It is as if "they" hold a secret and are guarding them at Fort Knox!! I guess it is not important enough to them in the whole scheme of things as she's dying.

I needed to know that we have done all we can for her, so I asked the oncologist if she could have had a liver transplant and he said it would have to be done today and even if she made it through the surgery, the microscopic cells left behind would most likely develop in the new liver and since she most likely has microscopic cells elsewhere, a whole new "ball of wax" would develop, so the answer was "no."  The oncologist said that her heart is fine and that most likely she will develop pneumonia and die in her sleep very peacefully.  He asked if she was jaundiced, yet and I told him she is not.  He seemed very surprised, but said she would probably have another 2 weeks from the 2 weeks he told my dad last week.  This is a far cry from the 7-6 months he gave her at consultation in January. 

Mom is so bloated and we need to find a way to get the fluid off of her if we can at all.  My father does not want her going to a hospital.  He is not sure about the pills and I told him they most likely will offer Lasix.  I think if she could get some of the fluid off, she might be able to sit up more and walk again, but I just don't know.  She is still very strong, but the bloating is terrible in her belly.  It is all focused there and the pain, which had subsided 6 days ago is now back, but I think it might be more from sleeping 97% of the time in bed.  She is not eating solid food at all and we are lucky if she drinks 1 Boost a day.  I guess like you said, Joyce, we think of wasting away as a gradual step-by-step, but I guess it is very unique for each person and there is no way of really knowing.  This has moved so fast, it is blowing us away mentally, emotionally, and physically!  I mean it was only a week and a half ago I was taking dinners to my folks and Mom was eating a good portion of it.  Now, we are down to 1 boost a day!  She can only get up with help now and it's a struggle--it's heartbreaking!

Can I just say that I am SOOOOO PROUD OF MY MOTHER!  Through all of this she has maintained faith, hope, love, and a wonderful sense of humor even with her dentures out!  She was always so self-conscious about keeping her teeth in but the last cycle of chemo left sores in her mouth and she has had to remove the uppers for the last week.  My heart aches so much for her.  I am torn to shreds inside.  I keep telling my family not to lose hope until all hope is gone.  Mom asks me every so often "am I going to die?"  I say, "I sure hope not, Mom!"  Some moments she talks as if she is knows she is dying and other moments she talks of the future and "when I get better, I'm going to _____." 


What is the point of typing any of this?   I guess I'm saying, if your loved one has a 13 cm mass in their liver and it's not resectable, enjoy the time you have with them and consider that there might be a chance that chemo can actually make them worse as I think it did in my mother's case and if you read jmoneypenny's reports, she can attest to that as well with a similar situation.  Research as much as you are able so you know you've done all you can but be kind to yourself knowing that even medical science and the doctors don't have answers for this disease. 

Also, if you keep getting a "stomach virus" check it out!  If you keep putting a heating pad on your side like my mother was doing, thinking she bumped into a chair when actually it was a "knot" of cancer and not a swollen bump as she thought--it's time to go to the doctor.  I'm sure she was already too far for help even in November when she noticed the lump, but if you keep getting stomach pain, diarrhea or just "don't feel right," please don't take it lightly for yourself or someone else.  I tried telling her to go to the doctor since early summer when I suspected something might be wrong because her memory was off, but I couldn't encourage or "threaten" her enough to go and Dad was not pushing the issue.  Unfortunately, it was not taken serious.  "I'm fine, and it will go away," she said. 

The oncologist said this cancer is "not rare" and that he has "treated several people with it."  If it's not so rare then why does Medicare say it is so rare they don't pay for some studies?  All I know is that my mother was officially diagnosed in January and here it is February with maybe days or at most a couple weeks?  I can't believe we've gone from 6 months to a matter of 2 weeks!  The only "common sense" explanation from the prognosis of "6-7 months and hopefully we can get you into next year" is that the prognosis was made before the chemo.  Now, after 2 rounds of chemo we are down to 2 weeks! 

It appears, unless a miracle comes from above quick, the world will lose another wonderful, self-sacrificing, giving soul, genuine in kindness and deed, and most helpful to those in need without expectations in return.  I have been truly blessed to have been given this woman to call my mother and so proud of her.  She will be missed more than words can express.  As bad as things look, it doesn't mean I'm not still praying and looking for a miracle...

I hope there is a cure for this terrible disease.  Honestly, I think they need a better blood test, spit test, urine test, "whatever it takes" test as a way of diagnosing it early before we can even hope for a cure that will help the people who have this. 

God bless all of you who are living through this and those of you who have loved ones with it.  It's an unpaved road to say the least and I feel love and admiration for each of you who are going through this battle.   

For family and friends having a hard time visiting or seeing someone with this cancer, tell them what is on your heart!  Odds are they are handling the situation better than you are and they will help you through it!  I know you look at them and words escape you but your heart is flowing with love for this person.  All I can say is don't hold back, keep it positive and say how you feel or share what you remember--a memory, a song, anything you shared together is shared again--it does help both of you get through it and laugh--laugh as much as you can together. smile  I am surprised at how much laughter Mom, Dad and I have had in this ordeal and I'm so glad her sense of humor is intact more than anything!

To be able to have the chance to show how much I love her and say "I'll see ya later, Mom" is a blessing I am truly grateful to have.  But for now,  I'm off to see my dear mother to do just that--keeping the love alive another day!

Re: Hello All-Mom with Liver Mass

Hya Bernie
I hope and pray that your mom is not in too much pain.
I found your mail so moving as we had many similarities.

I admire both you and joyce for your articles as I have been afraid to write in such detail about our journey. (Alans mom see remembrance)
We live in england and had a horrendous time with alan.
Alan was still at work in feb 2006 but our doctors did nothing and I took him in to hospital myself in the end. On March 1st 2006 alan was told he had 6 months to live.

On the 2nd march alan and myself were told there was virtually nothing to be done but they would try some chemo for about 6 weeks if this did not work it would be stopped. We finally got to oncology unit beginning of April and he passed away on the 30th of April.without any treatment. He asked if I would look after him to the end which I did and our local hospice (st Marys Hospice selly oak birmingham england )were magnificent in helping me on a daily basis.
Like Joyce, alan was still going out with his mates, he even managed to go to spain to see Rossie at the motorbike racing in march although he could not eat much and if he did it came straight back up. He organised the trip for himself and two of his friends, flew to portugal and he drove into spain. He was still going to do his banking etc until about a week before when he got an infection in his stent.

However, I keep repeating please everyone get second, third even fourth opinions.
Do not accept everything at face value.

I have had to pay approx

U.K.Member

Re: Hello All-Mom with Liver Mass

Dear Bernie,
I have so much to say to you and I don't want to exhaust everyone's patience on this board! I feel so badly for you - and I know it's also a form of SELF-pity, since your mother's situation is so similar to mine and your love for your mother shines through so brightly. I have lost my best friend and I need a shoulder to cry on and you're welcome to cry on mine.
I have to give dinner to my daughter now (the apple of my mother's eye, and she's very upset at losing Grandma even though she's only 4) but I will write back later. One piece of advice I have is that you should listen to the opinions of the hospice people rather than doctors (if the hospice people are competent - I guess not all of them are). The hospice nurse saw the signs of end of life a week before my mother died, and I couldn't believe her because my mother seemed to be doing pretty well. She told us certain signs to look for at the end, like the skin under the fingernails turning blue, shallow breathing, etc., and she was absolutely right. The trouble breathing my mother had was discounted as "anxiety" by the doctors, but hospice told her that cancer patients - no matter what kind of cancer - often get shortness of breath because of the anemia brought on by chemo and just general shutting down of body functions. They recommended small doses of morphine since it's a respiratory depressant - it doesn't make you stop breathing, just makes your breathing easier and it helped my mother immensely.

I'll write back later and check up on how your poor dear mother is doing. It's hard to be strong when your heart is breaking - for your father too - and I hope you're holding up as well as you can.
- Joyce

Re: Hello All-Mom with Liver Mass

Bernie - I hope you don't mind I sent a long-winded email to you directly - I just now realized that you may have thought it was spam because my email address is dotbaumann (my grandmother's name) so you may not have gotten it. Just checking - no need to reply. - Joyce

Re: Hello All-Mom with Liver Mass

Bernie
My wife (60 years old) was diagnosed with Colon Cancer and it spread to the Liver and the entire left side is covered. She has had 3 treatments with oxiplatin and 5 FU and so far she is reacting reasonably well. She does sleep a lot and each eat very little. The one thing she will eat is soups-- various kinds and jello. We have spoke to  a surgon about  resecting but he will only consider that if they can shrink to tumor. So like you I am not sure how successful her treatment will be, but hopefully all will go well

Keith