Doc says I only have a few weeks left

Sherry in WV · 08-12-2006, 12:02 PM

I had to go and get blood work today. My bili has gone from 8.2 to 14.4 in about a weeks time. Amonia level 95. The local hospital here faxed them up to UPMC for the study. The RN on duty paniced and called me. She worried about high levels. Called my Onc. He said he would put me in hospital if I wanted but would do no good. He said that when you take the meds needed to lower levels, you need a liver to cleanse, I don't have one left, MRI and Sono shows heavy progression of ghe disease with heavy many tumors. He also said no trail would take me due to the high bili and hi amonia levels. I cannot get into the compassion program close by> so any way you look at it I guess I only have a few weeks. Thing is I am not ready yet!

chrisy · 08-12-2006, 12:53 PM

Sherry, I am so sorry to hear this. I have no words but wanted you to know that my prayers are with you. Let your family and friends, including those here, wrap you in their love so you don't feel alone. Continue to post as your priorities allow - we care and worry about you.
Much love, hugs, and prayers
Chris

Sandy H · 08-12-2006, 01:04 PM

I join Chrisy in saying how sorry I am to hear this. It makes me a little angry to think there is nothing more they can do for you! I don't know what else to say at this point except, that you accept all the comfort you can get. Let your family and friends help to comfort you. At least the after life is no pain and fighting to survive. We are never ready because we don't want to leave family and friends and yet would like this all be over. I will continue to pray for you and may you feel God's arms around you. Sending you a big wrap around hug. Sandy

Barbara H. · 08-12-2006, 01:13 PM

Oh, Sherry, I'm so sorry to hear this!!!!!!!! Of course, you are not ready for this!!!!! Perhaps there is still a way, and someone here can help you. You seem to have so much courage and are so brave. It makes me angry that you can't get Tykerb when there is a possiblity that it could help.

May your family and friends surround you at this difficult time. You will continue to be in my thoughts, and write when you feel the need, or support.

Thinking of you!!!!!!
Barbara H.

StephN · 08-12-2006, 01:30 PM

Dear Sherry -
This is harsh news from you. Yet your spirit is shinning through and if I had any way to help you I would.

I looked up some reasons for high blood amonia. They mostly have to do with too much animal protein in your diet, but I don't know what diet you have been on due to the weight loss issue.
This is why I posted about the TPN nutrition supplementation a while back. I hope you saw it as a reply to your last post. The TPN is balanced to try to help prevent these problems.

I do not know if you are able to do ANY type of liver cleansing, even weak herbal detox teas, at this point. But you DO need liquids.

Here is a quote from my web search:

"There has been much evidence that if you can lower the ammonia levels, the encephalopathy can be controlled. Dietary changes can improve encephalopathy. Limiting the amount of protein and specifically the amount of animal protein is necessary. Taking Lactulose ( a sweet liquid that causes diarrhea) will also reduce serum ammonia. The amount of Lactulose taken should be sufficient to cause 3-4 loose stool perday."

The emphasis is mine, but suggests a product to reduce the amonia. Don't know where you get it, but you should be able to find it.

Hope you are still strong enough to try something, even the milk thistle, to help out your liver.

Keep on trying, as your docs are not giving you much to work with. Maybe a good internist could give you more advice about your liver functions.
Meantime, we will ask for special healing blessings and comfort for you and your family.

KathyH · 08-12-2006, 01:38 PM

Dear Friend,

What harsh news to have to face. I will not give up on the hope that someone out there has something to offer you. I wish you could at least try the Tykerb. I will be praying that a door opens. I don't want you to stop fighting until you want to. Please keep us updated.

Love and prayers, Kathy H

VaMoonRise · 08-12-2006, 05:58 PM

Dear Sherry,

My heart is breaking as I read your post. I wish there was something, anything, that I could do or say to help you.

Even though we have never met in person or truly gotten to know each other in the short time we have been posting on this site I feel a kinship with you as I do with all of the women battling this disease. You have such a strong beautiful spirit that continues to shine through even in the darkest hours and if I could take away your pain I would in a heart beat. Unfortunately all I can do is offer you my love and prayers. I will be praying diligently for you and your family, I will be praying for a miracle, for comfort, for strength and inner peace for you all.

Please know that you have touched and enriched the lives of many and we love you very, very much.

Love, Hugs and Prayers,
Nicola

Mary Anne in TX · 08-12-2006, 06:24 PM

Hi Sherry!

I will pray that God sends his angels to surround you with all the courage, peace, love, whatever you might need. I can't see how you could be ready. You've so much life in your words! May a miracle chase you down. Love to you and may God bless you tonight!
Mary Anne

heblaj01 · 08-12-2006, 06:25 PM

Sherry,
Very sorry to read your post. But don't give up. In addition to the suggestions by StephN I would suggest you ask an other opinion from an onc & from a gastrointestinal specialist for the liver. There may be a way out of your predicament.

Tom · 08-12-2006, 08:04 PM

Dear Sherry,

I hate to bother you with questions right now, but could you please give us a few more details with regard to your current treatment, and the status of your BC? Where is it now exactly, besides the liver and where IN the liver?

You mentioned the compassionate use program NEAR you. Is it for Tykerb, and WHY can't you get it? Is it because you aren't close to a participating hospital? Please let us know some more of your particulars.

I will have friends pray for you as I await your reply.

Tom

sarah · 08-13-2006, 02:17 AM

Dear Sherry,
This is devastating news. Steph and Tom seem to have good leads. I was wondering what if you faxed/emailed your medical situation to an oncologist at one of the top hospitals? Sloan Kettering or UCLA - isn't Dr. Slamon there??? to get a good second opinion. Maybe you're being treated by a top hospital already but maybe another doctor could get more done for you. What about Iressa and Avastin??? There are many people on this site who were given no hope and yet they are still here and living good lives so I'm sure someone will come up with good ideas. I don't think your onc should be giving up on you if you're not ready to give up. Get another opinion from a top one someone far from your hospital. You're courageous and miracles do happen and sometimes docs are wrong. Prove them wrong.
love and big hug
sarah

Kaye · 08-13-2006, 08:38 AM

Probiotics apparently reduces ammonia levels--per other article sent. One thing I have been doing, because of a gift of a friend, is probiotics.
She gave me a homemade kefir (liquid yogurt) culture which I take/make regularly. One can get liquid yogurt--kefir in a health foods store as well. As I mentioned, I am making my own.
In October 2004 I had a CTC (circulating tumor cell) blood test. My level was "4." Supposedly anything >2 is significant. During this time MRI scans showed what was suggestive of a possible malignant mass in the soft tissue area of my neck. I was in agony--couldn't lay down--was sleeping almost sitting up. Around this time I also supposedly had a tumor in my submandibular gland (not near the neck mass). I learned of this tumor in January. That same day I saw the radiologist who had done the scan and he recommended going on a vegan diet. That afternoon we met with friends we hadn't seen in almost 10 years. They gave me a gift of liquid kefir--my own culture to grow. I was trying to think of a polite way to not take this gift since the dr. had recommended I go vegan. Our friends told me that it could also be made vegetarian with soy. I took the gift and did it the way they did it.
I should mention that the culture was given to them by their Chinese opthalmologist who swears by its anti-cancer effects. Our friend had had elevated prostate levels at the time and after he began using it, they went down.
So, I decided to try it. This was in early January, 2005. Over the next 3 months the pain in my neck went away. In April I had the submandibular gland removed (different than the suggested soft tissue malignancy). Later that month I had another CTC (circulating tumor cell test). The result was now "0." The pain in my neck was gone. The next MRI showed the soft tissue mass to be gone.
Could it have been the kefir--probiotic treatment? Could the surgery to take out the gland have also had a placebo effect which somehow did something to change the environment of the soft tissue mass--even if not near the submandibular gland?
I have no clue--but the pain started going away soon after starting the probiotics.
This all happened 16 mos. ago.

tousled1 · 08-13-2006, 11:11 AM

Sherry,

My heart goes out to you. From your postings it is clear that you are not ready to give up. Perhaps you should seek an opinion from another oncologist, there is nothing to loose but a lot to possibly gain. I don't understand why you would not be admitted to a Tykerb study. You're in my thoughts and prayers.

RobinP · 08-13-2006, 01:36 PM

Dear Sherry,

Sorry to hear of your news. However, please don't give up. I love the suggestions by Steph. I also would recommend a good internist for some of your liver ailments. Praying for you.

08-13-2006, 05:33 PM

Sherry - there are no words to express my thoughts/feelings for you. Prayers for you...

Sheryl Francis aka Cosmicdust

karenann · 08-13-2006, 06:39 PM

My thoughts and prayers are with you. I, too, believe that you may still be able to receive treatment. I think Steph and Tom's ideas are really good.

Let me know if you want me to do some research for you.

Karen

mamacze · 08-13-2006, 08:07 PM

Dear Sweet Sherry,
You must be feeling beside yourself wondering which way to turn. And the person you are counting on the most, your oncologist, seems to be blocking your way out. I hear that you aren't ready to give up, yet it is clear that you have little energy left to fight. Perhaps you have the strength to make one more phone call. If so, please call the staff involved with the compassionate use of Tykerb and talk to them. It seems like you need to hear directly from them whether or not you are eligible. In the mean time, rest in the arms of your sisters here who will pray for you day and night; so you can attend to your greatest needs. God bless you, and your family, and your grandbaby angel girl.
Love Kim from CT

Rendi69CA · 08-13-2006, 08:23 PM

Sherry, girl I know it is hard. When I am stress out over bad news... everything goes down hill for me. Please relax my mind and be around your love one and be strong. My prayers go out to you and your family. Love you! xoxoxox

Lolly · 08-13-2006, 09:29 PM

Dear Sherry, I will keep you in my thoughts and prayers. I believe that if one isn't ready to go, the spirit can carry the body long past the appointed "time of departure". Keep your spirit strong, and you will know when you're ready, not the docs.

<3 Lolly

Kaye · 08-13-2006, 09:44 PM

Sherry, not sure why this post did not come through--thought it did and actually sent it before other one came through that WAS posted.
I thought you might find it of possible interest--a way to reduce ammonia levels through with something called alpha-ketoglutaric acid that, from what I can gather, can be purchased in a health foods store. I don't know anything about it but thought you might find it of possible interest--see below. I also did a google search on "ammonia reduction" and cancer and had posted that address also--am not sending that now--just first article'
"http://www.drwardbond.com/index.asp?cat=105766

"Alpha-ketoglutaric acid (a-KG) is a naturally-occurring chemical, formed primarily as part of the citric acid cycle inside cells. One of its most important functions is to detoxify ammonia from tissues of the central nervous system. In the brain and central nervous system, alpha-keto combines with ammonia to form glutamic acid and then glutamine. Glutamine crosses the brain-blood barrier and transports the ammonia out of the brain. Alpha-ketoglutaric also scavenges nitrogen released by the catabolism of amino acids, thereby balancing the body’s nitrogen chemistry and preventing nitrogen overload in body tissues and fluids.

As a result of excessive protein ingestion or poor amino acid metabolism, excess nitrogen and ammonia can accumulate in cell tissue. Bacterial infections and intestinal dysbiosis can also elevate ammonia levels in the body. High levels of ammonia or nitrogen in the body can deplete the supply of alpha-keto, allowing ammonia to reach toxic levels. The consequences of excess ammonia (hyperammonemia) may include headaches (migraine), fatigue, irritability, nausea, and diarrhea. Ammonia can attack lipid membranes such as the myelin sheath of neurons. Chronically elevated ammonia in brain tissues can lead to mental confusion and decreased cognitive abilities.

Individuals with high protein intake, problems in nitrogen detoxification or intestinal dysbiosis may benefit from supplemental alpha-ketoglutaric as a central nervous system detoxifier.

Other conditions associated with elevated ammonia levels include:

Autism Spectrum disorders
Excess aluminum exposure
Magnesium deficiency
Manganese deficiency
Liver disease (cirrhosis)
Reyes syndrome
Urea cycle dysfunctions
Exposure to toxic nitrogen chemicals such as amines, hydrazines, ammonium compounds

Other functions of alpha-ketoglutaric which may suffer as a result of depletion include:

Production of cellular energy via the chemical transfer of energy during the citric acid cycle. (Alpha-ketoglutaric has been found to be helpful in alleviating fatigue and increasing stamina.) Formation of carnitine, necessary for proper metabolism of fats. (Inadequate carnitine may result in elevated triglycerides.) Formation of a biologically active coenyzme form of vitamin B3.

Research and applications

Jon Pangborn, Ph.D. first introduced alpha-ketoglutaric acid to the nutritional supplement industry in 1981. As a result of his published research on the citric acid cycle and on nitrogen detoxification, he saw the need for a nutrient that was effective in reducing ammonia levels in individuals with high protein intake or with problems in nitrogen detoxification. Dr. Pangborns original application for alpha-ketoglutaric acid was for excessive nitrogen or ammonia that may occur in some autistic children. Because toxicity in general is a component of autism, he suggested that alpha-ketoglutaric acid could be nutritionally beneficial in some cases.

Dr. Arthur Hume is a toxicologist and professor in the Department of Pharmacology and Toxicology at the University of Mississippi Medical Center. Dr. Hume, in conjunction with his fellow researchers at the University of Mississippi, conducted experiments with lab animals on the effectiveness of utilizing orally administered alpha-ketoglutaric acid alone or in combination with N-acetylcysteine in reducing the lethal effects of potassium cyanide. The mechanism of action Dr. Hume proposed was that AKG binds cyanide in the blood circulation.

Recently, Dr. William Shaw of Great Plains Laboratory has suggested that some autistics have citric acid cycle mimics in their gut, produced by dysbiotic flora as is evidenced by laboratory evaluation. Dr. Shaw found these organic acid interferants in his laboratory studies of urine from autistic individuals and has lectured on his findings.

Selected References

Dulaney M., Whitney S., Hume A.S., "Protection Against Cyanide (CN) Toxicity by Prior Oral Administration of Alpha-Ketoglutaric Acid (a-KG)", Dept. of Pharmacology and Toxicology, University of Mississippi, Jackson, MS (1987). Ganrot, P.O., "Metabolism and Possible Health Effects of Aluminum", Environmental Health Perspectives, 1986; 65: pp.363-441. Kjellman, Ulf., et al., "A-ketoglurate for Myocardial Protection in Heart Surgery", Lancet 1995;345: 552-553. Lehninger, A.L., Biochemistry, 2nd ed., Worth Publishers (1975) , pp. 562-566. Moore, S.J. and Hume A.S., "The Prophylactic Efficacy of A-Ketoglutarate in Reduction of Lethality Due to the Inhalation of Gaseous Pyrolysis Products of Polyacrylonitrile", Dept. Pharmacology and Toxicology, University of Mississippi Medical Center, Jackson, MS (1986). Moore, S.J., Norris, J.C., et al., "Efficacy of a-Ketoglutaric Acid in Antagonism of Cyanide Intoxication", Toxicology and Applied Pharmacology 1986;82: 40-44. Norris, J.C. and Hume A.S., "Antagonism of Sodium Nitroprusside-Induced Lethality by a-Ketoglutaric Acid, Dept. Pharmacology and Toxicology, University of Mississippi Medical Center, Jackson, MS (1985). Yamamoto, H-A, "Hyperammonemia, Increased Brain Neutral and Aromatic Amino Acid Levels, and Encephalopathy Induced by Cyanide in Mice", Toxicol. App. Pharmacol. 1989; 99: 415-420."