After in the liver, it's over

HavahJ · 02-11-2008, 04:03 PM

I can't get away from this. I had a single metastasis for three years and then suddenly in a month 15 lesions on my liver. My Ca27,29 went up 600 points. I went on herceptin abraxane, but how much time do I have left? Let's say it's the usual. How many months is that if nothing works? I feel like I'm watching a movie but that someone else is in it.

pennyv · 02-11-2008, 04:22 PM

am not sure how appropriate my reply is to your post but whilst investigating her positive bc I was recommended immunotherapy
have been told that a practitioner of this therapy has had success with a patient with liver mets
the therapy recommended is dendritic cell therapy and I believe it is being offered in germany by Dr Marks telephone 0049.5527 9971 -11 or Dr Thomas Nesselkat Hintersten 51-3 Duderstadt 37115
Please speak to your oncologist first to see if this is going to be suitable for you,my understanding is that it has been used in a patient with liver mets but he will be able to advise better than me!
Good luck!!!

Vanessa · 02-11-2008, 04:24 PM

I had liver mets in June of 2006, I had TCH and they disappeared and have not returned. I have brain mets now, but they are shrinking.

StephN · 02-11-2008, 04:24 PM

Hi HavahJ -
I know what you mean about watching a movie starring someone other than yourself. There is a defense mechanism that kicks in (I believe) that allows us to detach ourselves somewhat from what is happening to us. Thus the "unreality" syndrome. Plus we don't feel really bad as if we were "sick" in the usual sense.

There are more serious places your mets could be than your liver. As a 6-year survivor of extensive liver mets, I can say that the liver has certain properties that are in your favor.

The liver is a large filter, so any cancer cells in the blood that are caught in this filter don't get a chance to go elsewhere. If your treatment is successful, the areas of dead tumor can actually regenerate. This is the only major organ that has this ability.

My med onc gave me about a year if my treatment did not work, but I had "too many tumors to count" and a couple were fist size. If I can prevail over this kind of mets invasion, keep your chin up and try to think positive.

I know that is hard until you have some scans to see how you are doing. You should be getting tumor markers checked often, but it may take a while to show a significant drop.

P.S. I had no spread to other organs or lymph nodes during my active treatment. My 2 brain mets showed up a couple of years after I was NED.

Andrea Barnett Budin · 02-11-2008, 05:46 PM

Dear Havah, Orig dx in '95 w/4th stage ivasive lobular carcinoma. You can check out my signature. In '98 I, like Steph, had multiple tumors throughout my liver (too many to count). It was discovered that I was HER2+. I had 9 mnths of Taxotere and began Herceptin (newly FDA approved) 2 mnths in. I had CT scans ev 8 wks. Slowly, but steadily, my tumors decreased in size, until 9 mnths later, I was cautiously pronounced NED. I remain stable to this day (9 yrs later).

I too thought I was dying. I too felt like I was watching a movie w/someone else starring in it. I was detached. I believe I was undergoing a spiritual transformation, devouring bks searching for help. As I began to identify myself as a Soul, with a mind and a body, I could observe myself as The Witness. I embraced the concept that we are each given the power to heal ourselves (once we become cognizant of this gift). So I commanded my body to become cancer-free. I meditated and found a safe, joyful and serene place to escape to as often as I wished. I took my long list of supplements recommended by my oncologist who believes in all this, as an INTEGRATIVE approach and who specializes in nutritional supplements. These boosted my immune system, helping to stave off cancer, boosting my T cell count and fighting off free radicals. I BECAME EMPOWERED.

So my rough experience enduring 9 mnths of Taxotere and the boon of the availability (not to mention the creation of) Herceptin have all helped to save my life. Havah, don't give it all up just yet. IF ONE PERSON CAN SURVIVE THE SAME KIND OF CANCER -- SO CAN YOU!!!

Sending you loving, healing, supportive energy,
Andi

Bill · 02-11-2008, 06:26 PM

Andi is right, Havah, she is living proof that you can beat this, and there are wonderful new chemos. and techniques being developed all the time. Please try to stay positive and hang in there, we're all pulling for you. Love, Bill

Faith in Him · 02-11-2008, 10:27 PM

Havah,

There is lots of reasons to remain hopeful. Vanessa, Steph and Andi are a few. There is a treatment out there that will work for you. I am thinking only positive thoughts for you.

Tonya

tousled1 · 02-12-2008, 05:01 AM

Havah,

I'm sorry to hear aout your liver mets. Steph, Andi and Vanessa are examples that you can and will beat these mets to the curb. Don't get discouraged.

goops · 02-12-2008, 06:05 AM

I am so sorry to hear of your mets HavahJ, I will pray for the doctors to find the right combo of drugs to help you.

Catherine · 02-17-2008, 11:13 AM

Hang in there the best you can. I am always so impressed with comments of those that have been beating cancer back for so many years. It really can be done. I, too, will hope that your doctor can find all the right meds for you. Your team is behind you.

Hugs, Catherine

Jackie07 · 02-17-2008, 06:50 PM

Positive thinking and pleasant thoughts will increase the release of endorphin in our brain which helps our immune system to fight whatever is out there. Like one of the members had said that liver is really a better place if we have to have mets. Medical science is so...amazing these days. Cancer has become a 'chronicle desease'. If there's a way to control or maintain it, we are on our way to the winning side. Take some deep breaths and read those successful stories. You are on the right track to be on this board.

jml · 02-17-2008, 07:44 PM

Havah J~
I was dx'd Stage IV w/single liver lesion.
After 8 unsuccessful weeks on Navelbine/Herceptin, I progressed to "innumerable, immeasureable" mets...
That was 51/2 yrs ago.
Ultimately, Taxol/Herceptin is what successfuly knocked my disease to NED.
I had multiple recurrences -same single lesion popping back up, but each time we'd knock it back w/TH.We tried Hereptin/Abraxane, but that didn't work for me either, so we switched to TCH & that did the trick.
Since each recurrence was only the single met, my doc said I was a candidate for a liver resection - that was done in Dec.2005.
My liver has been NED ever since.

You will find the right combo...
The liver is an amazingly resilient organ & the human body has amazing capacity for healing & survival.
Keep the Faith, HavahJ!

prasadgvs · 03-02-2008, 10:33 PM

Hi :-
I am new to this website and please bear with me & my questions.
My mom ( India) has BC in 2005(HEr+++,ER/PR--) and she had recurrence locaLLY 6 months back. She had normal chemo this time and rads for 5 weeks.
We came to know that now she developed secondaries in liver( assuming these are liver mets) and she has plenary effusion( water in lungs) which is causing a lot of breathing problems
My mom is not knowledgable abt the disease, very weak physically after the treatment. The Onc said with liver mets and her condition it is better to stop furthur treatment. According to him she has utmost 6 months
Our whole family is shatterred ..we thought we atleast have couple of yrs but this was too fast. My wife is expecting and we thought my mom get to see her grandchild etc etc..
I read a lot abt herceptin. and I know some of you in these posts had liver mets. Can you please tell us what are various treatment options tried after the onc found liver mets.. and what options we can try..With my mom's condition chemo is ruled out..
Is herceptin an option ?? And is this water in lungs a common occurrence..This is the second time she has this in the last 4 months
Any positive experiences with liver mets are appreciated
Satya

madubois63 · 03-03-2008, 07:02 AM

Satya - I am assuming your mom is in India (the country) and that isn't her name. Are you in India? Forgive me if I make the answers too easy or too hard to understand.

How old is your mother and what makes it that chemotherapy is not an option? India has wonderful doctors. Many have been trained here in America and are aware of the latest treatments available. I am very close to Stony Brook University Hospital in New York, USA. It is a teaching school. I have been treated by many doctors and internists that have trained here and gone back to India. Can you find another doctor, maybe American trained, that is willing to be adventurous in treatments??

I have been told I had less than 6 months to live several times now. I've been around for 8 years longer than the doctors gave me, so don't believe what they say! Having metastatic disease in the liver is no longer a death sentence! Herceptin is not a chemotherapy and is very easily tolerated. Most times, it is given with a chemotherapy for synenergy, but it is not unheard of to take the Herceptin alone if need be. It is very expensive, and I don't know about health care in India. Will they pay for it? Can you take her to other doctors for second and third opinions?

Besides that, your mother needs to see a pulmonary doctor or thoracic surgeon to have the fluid removed and checked for cancer cells. It is not uncommon to get a build up of fluid in the lungs or near the heart when there is cancer in the body. The body is trying to fight the inflammation the cancer is causing (but it is not winning). If you are trying to search this condition out, it is properly called pleural effusion, and she will need to have the lungs drained, which is called thoracentesis (pleural tap). That will help your mom breath better and be less exhausted. I've had my lungs drained three times. Each time, more than two liters of fluid was removed. That is a lot of weight for your mom to be carrying around!! A thoracic surgeon may decide to seal the lungs with a talc so that the fluid can't come back. This procedure is called pleurodesis. I've had it done twice.

It's been four years since the liver mets. They are gone now thanks to Herceptin, Carboplaten and Taxotere. It is a very hard combination to take, but it worked for me. I was 40 at the time. This might be too hard on your mom, but there are other options. I've recently had a relapse with mets to the lung and have just started taking Herceptin with Xeloda. It has been very easy for me to take and so far, the side effects have been very minimal (diarrhea and a little nausea - no hair loss).

Please don't give up on your mom. You are such a good son for posting. The thought of my son posting for me, truly brings tears to my eyes. Bless you all (and your new baby too). I pray you find a good doctor and your mom gets to see ALL her grandchildren grow up.

Diana1993 · 03-03-2008, 08:44 AM

Maryann, Your story is close to my experience with B.C. I was diagnosed in 1993 and after 5 years passed I thought I was home free. It was not the case. I've had the pleura drain, and pleurodesis done in 2001. Evidence of B.C. cells in fluid. Hysterectomey in 2003, and at this time they said nodules were everywhere and gave me a few months to live. With this news I decided to just go and have fun and for two years I danced all over the U.S. and Canada. In 2005 I had kidney stents put in and life with the stents was difficult, I decided maybe life was worth living and agreed to Taxotere and Herceptin and Aromasin. Tumors declined and retreated and the kidney stents came out. I learned in Nov. 2007 these have stopped working and now on Xeloda and waiting for Canada to approve lapatinib. I didn't qualify for the clinical trial. I have soft tissue mets and no measurable tumor is evident, only scar tissue and fuzzinessI haven't given up hope yet and I plan on doing lots more dancing. I'm off now to meet up with my San Antonio dancing friends. I will dance sore feet and all.
Hugs to all,
Diana

madubois63 · 03-05-2008, 11:48 PM

Diana - great post - very inspiring!! I pray you get the Tykerb soon, and dance all over the world as much as your feet can take!!!!!!

Joan S. · 03-09-2008, 12:54 PM

I sure hope it's not over once you get liver mets! I have liver mets, a bone met and one on the rib. I was diagnosed 7 months after a "supposedly" clear mammogram and a month before my daughter's wedding. I was on arimidex for two months because I didn't want to lose my hair before the wedding. It didn't work. The tumor grew so much it was bruising my breast and I went on to taxol and herceptin for 9 months. My doctor said my progress on it was remarkable but I had to take a break once the neuropathy started to get worse. I have been on aromasin and herceptin for six weeks now. I feel great. I am going to ride this wave as long as I can. I love seeing my hair grow back. I am trying to be positive because I think it makes all the difference in the world. I pray a lot and I am not religious. It's amazing how something like this bring you back to G-d. The support and love of friends and family has been amazing and most of all my wonderful huband who has gotten me through this.
I was just wondering is Tykerb an option if I need a next step. Why hasn't my doctor recommended it?
Also, had a bad cold this week and I seem to feel every met. Is this normal or is it just coming back?
Can't they use gammma rays or those radio waves on the liver mets?
I feel like knowledge is power and I want to be armed.
Nobody mentions the effect of taxol on the nails. I have lost part of one toe nail and the rest of them are looking weird. However, that is really the least of it!
I pray every day that I get to see my grandchildren someday(my kids are in their twenties).
Thanks for all of your support!