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Life Expectacy Less Than One Year

jfpilk
Posts: 6
Joined: Jun 2011

I have stage 4 anal cancer that has spread to the liver, lungs, and groin area. My oncologists give me less than a year to live. I have tried various chemo drugs to date, and my tumors, though small, are not reducing in size.
I am surrounded by great friends and have a loving partner. Unfortunately, he lives in Europe, and I live in Atlanta so we only see each other every 6-8 weeks. I feel great but am told that the end will be near soon. I am still feeling that I can conquer the disease but, save for a miracle, know it will not happen.
I would be interested in talking to other stage 4 people about how they are dealing with the coming end of life. I am spiritual but not interested in talking with Christian conservatives.
I am also interested in talking with anal cancer people about what chemo drugs they are taking. My oncologists are running out of ideas. Has anyone taken the drug Erbitux?

z's picture
z
Posts: 1250
Joined: May 2009

Hello and sorry you have to be here. Please go to RCA Rare Cancer Alliance Web site, there are stage 4 survivors there and one with ned Winnie who is a forum moderater. There is tons of information. Winnie had a winning chemo regimen, in which she will elaborate. I wish you well. Lori

jfpilk
Posts: 6
Joined: Jun 2011

I will go to that web site today. You are great!

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I'm really sorry to hear of your situation, but I agree with Lori that you need to take a look at the RCA forum where Winnie resides. She is a vitual friend of mine and I can give you some preliminary information on the treatment she received. She, indeed, is a Stage IV anal cancer survivor who had mets to her liver. She was treated with a chemo regime of Carbo, Taxol and Xeloda (the latter because her tumor spread into her rectum). However, she did not have lung mets. The doctor who treated Winnie with this chemo treatment is named Dr. William Stanton, who can be contacted via e-mail at stanton.william@scrippshealth.org. He is located in California. His phone# is (619) 839-0193. The doctor who initially came up with this chemo mix is Dr. J.D. Hainsworth in Tennessee. I suggest Googling him and seeing what you can find out. I am not familiar with the drug Erbitux, other than recognizing the name.

Did you receive all of your prior treatment in Atlanta? I would be curious to know more about who treated you, when and where, as I live in the metro Atlanta area also. Fortunately, my cancer was on the fence between a 1 and a 2, there were no mets. I received the standard Nigro protocol almost 3 years ago.

Please check out Rare Cancer Alliance. I send you my best wishes.

z's picture
z
Posts: 1250
Joined: May 2009

I am replying on your post so that it will show a new post on this string. For some reason it isn't showing as new on the topic and I want jpfilk to see it. By the way, I wish you well. Lori

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I'm doing fine and hope all is well with you! Have a nice weekend!

mxperry220
Posts: 349
Joined: Mar 2011

You might also contact M.D. Anderson cancer Center in Houston, Texas. They are one of the top cancer facilities in the nation. I am an anal cancer survivor. My cancer was Stage 2. The two chemos used on me were Mytomycin and 5FU. I live in the Dallas Fort Worth Metroplex. I had my cancer treatments at Baylor Plano for convenience reasons. We also have the Sammons Cancer Center associated with The University of Texas Southwest which is supposed to be one of the best facilities in the nation. Also, one of my neighbors was diagnosed with prostate cancer and bladder cancer. He did not receive good treatment recommendations in the DFW area. He went to Oklahoma to the Cancer Centers of America and has had positive results with their treatment regime so far.

Good luck with your journey in conquering ths horrible cancer.

mxperry220
Posts: 349
Joined: Mar 2011

Here is some info I found on the interenet regarding Erbitux in case you have not read up on it.

From Wikipedia, the free encyclopedia

Cetuximab (IMC-C225—marketed under the name Erbitux) is a chimeric (mouse/human) monoclonal antibody, an epidermal growth factor receptor (EGFR) inhibitor, given by intravenous infusion for treatment of metastatic colorectal cancer and head and neck cancer.

Cetuximab is manufactured and distributed in North America by ImClone and Bristol-Myers Squibb, while in the rest of the world distribution is by Merck KGaA. Cetuximab is given by intravenous therapy and costs up to $30,000 for eight weeks of treatment per patient.[1]

[edit] Indications

Cetuximab is indicated for the treatment of patients with epidermal growth factor receptor (EGFR)-expressing, KRAS wild-type metastatic colorectal cancer (mCRC), in combination with chemotherapy, and as a single agent in patients who have failed oxaliplatin- and irinotecan-based therapy and who are intolerant to irinotecan. The positive opinion from the Committee for Medicinal Products for Human Use (CHMP) was received for mCRC 1st line use in May 2008.[citation needed]

Cetuximab (Erbitux) is indicated for the treatment of patients with squamous cell carcinoma of the head and neck in combination with platinum-based chemotherapy for the 1st line treatment of recurrent and/or metastatic disease and in combination with radiation therapy for locally advanced disease. The positive CHMP opinion for this indication was received in October 2008.[citation needed]

A diagnostic immunohistochemistry assay (EGFR pharmDx) can be used to detect EGFR expression in the tumor material. Approximately 75% of patients with metastatic colorectal cancer have an EGFR-expressing tumor and are therefore considered eligible for treatment with cetuximab (SPC).[citation needed]

[edit] Biomarkers

In mCRC, biomarkers, including KRAS, are indicative of response to cetuximab (Erbitux). 60% of patients express the KRAS wild-type tumor and data have shown that these patients are significantly more likely to benefit from treatment with cetuximab or a combination of cetuximab plus chemotherapy. Two recent studies demonstrated that patients with KRAS wild-type tumors demonstrated significantly increased response rates and disease free survival when treated with cetuximab and standard chemotherapy (OPUS AND CRYSTAL), compared to patients receiving chemotherapy alone.

There is increasing evidence to support the use of biomarkers in predicting tumor response to treatment, as this allows therapeutic approaches to be tailored or personalized to individual patients and results in improved outcomes and survival. While there remains some scientific controversy on this, assessment for EGFR expression is required for the use of cetuximab (Erbitux) in Colorectal Cancer, but not in Head & Neck Cancer.

[edit] Clinical uses

[edit] Colorectal cancer

Cetuximab is indicated for the treatment of patients with EGFR expressing, KRAS wild-type metastatic colorectal cancer in combination with chemotherapy or as a single agent in patients who have failed in oxaliplatin- or irinotecan- base therapy and who are intolerant to irinotecan. While there remains some scientific controversy on this, assessment for EGFR expression is required for use in colorectal cancer, but not in head & neck cancer.

Many clinical trials have been conducted to investigate the efficacy of cetuximab (Erbitux) in metastatic colorectal cancer (mCRC) and there is increasing evidence to support the use of biomarkers, such as KRAS, to predict tumor response to anti-EGFR therapies. Two large clinical trials of cetuximab, OPUS[2] and CRYSTAL,[3] have recently been published, and have provided further evidence that cetuximab significantly improves response rates and disease free survival rates in mCRC patients with KRAS wild-type tumors.

A study in June 2010 found that Erbitux failed to benefit patients with less advanced (non-metastasized) stages of colorectal cancer [1] with no improvement in survival rates. Adding Erbitux instead increased the side effects of chemotherapy. Several recent studies showed:

Adding the targeted drug cetuximab to a three-drug chemotherapy regimen for first-line treatment of metastatic colorectal cancer does not improve response rate, progression-free survival or overall survival, researchers reported at the 35th Congress of the European Society for Medical Oncology (ESMO) in Milan, Italy

A second Phase III study (COIN) of cetuximab in combination with capecitabine and oxaliplatin versus chemotherapy alone in first-line mCRC, did not meet its primary endpoint of overall survival in K-ras wild type patients (17 months vs. 17.9 months; HR 1.038; 95% CI 0.90 - 1.20; p=0.68).

[edit] Head and neck cancer

Cetuximab was approved by the FDA in March 2006[4] for use in combination with radiation therapy for treating squamous cell carcinoma of the head and neck (SCCHN) or as a single agent in patients who have had prior platinum-based therapy.

Two landmark studies have evaluated the benefits of cetuximab (Erbitux) in patients with SCCHN in both the locally advanced (Bonner trial) and the recurrent and/or metastatic (EXTREME trial) settings. The EXTREME trial is the first time in 30 years that a Phase III trial has demonstrated a survival benefit in 1st-line recurrent and/or metastatic disease. Erbitux was granted approval by the European Commission in November 2008 for the treatment of 1st-line recurrent and/or metastatic SCCHN based on the results of the EXTREME study.[citation needed]

[edit] Side effects

One of the side effects of Cetuximab therapy is the incidence of, possibly severe, acne-like rash. This rash rarely leads to dose reductions or termination of therapy. It is generally reversible after treatment is finished and may also be associated with a good response to therapy.[5]

As well as severe infusion reactions including but not limited to: fevers, chills, rigors, urticaria, pruritis, rash, hypotension, N/V, HA, bronchospasm, dyspnea, wheezing, angioedema, dizziness, anaphylaxis, and cardiac arrest. Therefore, pretreatment with diphenhydramine 30-60 min. before administration is standard of care. Other common side effects include photosensitivity, hypomagnesemia due to magnesium wasting, and less commonly pulmonary and cardiac toxicity. [6]

[edit] KRAS Testing

The KRAS gene encodes a small G protein on the EGFR pathway. Cetuximab and other EGFR inhibitors only work on tumors that are not mutated.[7][8]

KRAS mutational analysis is commercially available from a number of laboratories.

In July 2009, the US Food and Drug Administration (FDA) updated the labels of two anti-EGFR monoclonal antibody drugs (panitumumab (Vectibix) and cetuximab (Erbitux)) indicated for treatment of metastatic colorectal cancer to include information about KRAS mutations.[9]

Studies have indicated that detection of KRAS gene mutations helps physicians identify patients that are unlikely to respond to treatment with targeted EGFR inhibitors, including cetuximab and panitumumab. Accordingly, genetic testing to confirm the absence of KRAS mutations (and so the presence of the KRAS wild-type gene), is now clinically routine before the start of treatment with EGFR inhibitors. mCRC patients with wild-type KRAS tumors have been shown to benefit from a response rate of over 60% and a decreased risk for progression of over 40% when treated with Erbitux as 1st-line therapy.[2] Recent data suggest that around 65% of mCRC patients have the KRAS wild-type gene.[3]

jfpilk
Posts: 6
Joined: Jun 2011

Thanks for all this great info. Jim

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

I'm sorry you are facing such a difficult journey. I agree with the other memebers, get another opinon. If you can try to get to MD Anderson to see Dr. Cathy Eng. She specializes in anal cancer and is on of the best.
I wish you healing, hope and miracle.
Liz

Captain11
Posts: 88
Joined: Apr 2011

I was diagnosed with stage 3B, but after my radiation and chemo, my scan showed the cancer spread to the lymph nodes. From my understanding, if a tumor has metastacized, it is stage 4, I could be wrong. The radiation I had was 6 weeks, with a week of chemo, 5FU and mitomycin during the 2nd and 5th week of radiation treatment. After learning the cancer spread, I was given 4 to 6 months to live (without further treatment). Due to other circumstances, I got a 2nd opinion. I got the same news. My new onc gave me the option of a 6-step chemo treatment of cysplatin. It is lethal and very harmful to the kidneys. I took my chances with the new chemo, from which I did very well, with no problems or damage to the kidneys. I have been cancer free since completing treatments in March 2010. As far as end of life, although I am a devout Catholic, and I believe I have lived a good life, I have made mistakes; therefore, I don't judge others. I am not afraid of the end of life, as long as I go painlessly in my sleep. The cysplatin treatments were rough, every 3 weeks, 120 consecutive hours of infusion through the port-catheter. I couldn't keep up my strength, and I lost more weight. So, I asked my onc if he could either lower the dosage or spread out the treatments. After all, what good is the treatment if I am not strong enough to get the next round??? My doc did both, he lowered the dosage and put me on a 4 week cycle. My 6th treatment was the worst, I didn't think I was going to make it. But, I responded well, got a bit more strength and continued on. I live in upstate NY and go to NY Oncology Hematology. I don't know anything about Erbitux. I know there are over 200 chemo drugs. There has to be something out there for you. You can still conquer this disease. There are miracles out there. I wish you well. God bless.

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

I had a 2.5cm tumor with two spots on in my perirectal lymph nodes. If the spread is local it is not deemed to have metastized. It depends on which lymph nodes were impacted. I also received Cisplatin versus Mitomycin. I was told that Cisplatin is less toxic than Mito. I received it every week. Fortunately I did well on it. I have approaching my 2 year cancer free or NED mark.
Liz

Captain11
Posts: 88
Joined: Apr 2011

Hi, Lideli, I wonder why we got different info about the cisplatin??? Anyway, I hope your version is correct, as I am only 15 months clear... But, either way, I think there is hope for Jim (?) is it? I am not good with remembering names, sorry. My tumors spread into the lymph nodes around the liver, the perirectal area, the abdomen and my right lung. Luckily the one in the lung was only a major scare, in that it was an infection caused by my port which was contaminated and exposed through my skin. Thank you for your insight and clarification. Either way though, after a long and hard series of the cisplatin and more 5fu, I managed to get through it, so I do believe in hope and the prayers and well-wishers of others. Also, laughter really helps. I thank God every day that my husband and I are such funny characters and that we make each other laugh. He had a horrible time with his cancer surgery. He was susceptible to so many infections. At one point I counted 26 tubes, 14 going in and 12 coming out of his body, feeding tubes, 6 bags of different antibiotics (all at one time), catheters in every organ, both lungs, stomach, (or what was left of it) intestines, heart meds, blood pressure meds, 44 pints of blood, sedatives, pain meds, and the list went on. He was in ICU for 11 weeks, 9 of which on 100% oxygen, which is so very damaging to the lungs. His chances of survival were less than 24 hours right off the bat, but he made it through. After ICU he was in isolation due to MRSA. He went through 7 weeks of extensive physical rehab while in the hospital, and 3 more months of OT and PT at home. He is doing fine now, as he is almost 3 years clear. I was his care giver, until I was diagnosed in June 2009, now he is mine. THERE IS HOPE and THERE ARE MIRACLES. I wish you and all of us well. God bless.

sissy310
Posts: 300
Joined: May 2010

Wow Captain, talk about a long road you were on with your husband and now yourself. When I come in here it amazes me to hear such stories of strength and perseverance...and have read what Winnie too went through and was a stage IV. I am uplifted by the strength of the human spirit even through everything one goes through with this cancer and other cancers. My thoughts and prayers are with everyone on this post. Marilyne

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

I was a hospice volunteer. We have a patient that is 104 that was given less than six months to live six years ago. Half of my hospice patients were dropped from the program even after they renewed a couple of times. No one knows except God when our time will come. We have to live as best we can each day and trust and hope our lives bring meaning to others. Yours has to mine just by your post here. I've been thinking about you for days.

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