NEW HERE AND BEYOND SCARED NEED INFO

[trishdowell]

My heart is aching for you. I can feel the pain you are in by reading your words. Try to give yourself credit for your strength, despite the fear, tears and downright panic, you are doing an amazing job as a supporter. That is what your husband needs the most, just to be with you and know you are there, even if you are a crying mess, he doesn't care.

This past Monday I was given the same news. The very worst part of all of this is watching what it does to my husband and kids. I feel strong, but i know they are terrified. I'm happy for you that you are seeking support here, I hope it helps.

We did find a clinical trial at MD Anderson, so I am headed there Feb 1. I live in IN, but have a couple friends in Houston who have offered me a place to stay. I'm clinging to this ray of hope as a way to get through. My oncologist found this trial and made all the arrangements. I would talk to your doctor about clinical trials or get another opinion.

[Toms wife]

We to are from Indiana and are going to MD Anderson at the same time you are. My husband has testing all day on Jan. 31st with results on Feb. 1st. He has Ct scans, blood work, and meets with his blood clot doctor.I wish you the very best of luck with your clinical trials and many prayers your way for you and your entire family. If I may ask, did you have any signs or syptoms that you had a six inch mass or any complications? My husband had none, had some bleeding went to family doctor and he said it was nothing but put my beloved hubby on 10 day antibiotic. Cleared up after a couple of days, but reappeared within two weeks. He pushed for colonoscopy and was told he had a very large mass. The part that make me so ill, is on March 23, 2010 he had his yearly physical, fecal occult test done as he had previous years, and still we got the post card in the mail that said he passed his annual health screening and keep up the good work, only to be told the devasting news in mid Nov. Once again many heartfelt prayers your way as you continue your journey from Indiana to Texas. Maybe we will cross paths. My husband has a brother who lives 45 minutes away from MD Anderson so we will be staying with them.

[drose]

My husband is currently going through treatment at MD Anderson. Could you give me any information about the clinical trial? We live north of Houston. Maybe we could all get together sometime!

[trishdowell]

D.Rose: the study is Azacitidine and CAPOX in Metastatic Colorectal Cancer trial # NCT01193517. My tumor biopsy needs to be CIMP positive. That is the last test I am waiting on. Let's keep in touch!

toms wife: for several months I was exhausted. I went to the doctor thinking maybe I was depressed or something as my daughter had been hospitalized for a few weeks following complications from back surgery (she is fine now). Then in April 11 I started to have trouble swallowing. Lots of burning, then food would get caught. I lost some weight, too, but I used to work out reguraly so I just thought it was from that. An EEG revealed that I had a fungal infection in my esophagus. The GI doc said that it was odd to find it in a healthy person since it was usually only found in people with hiv or cancer. She did not further testing. My other vague symptom had been shortness of breath, but I thought I had asthma, took an inhaler and didn't think too much of it. Until 3 days after the EEG I could barely walk from my house to the car without stopping to catch my breath. I saw my gp and he took one look at me and sent me to the hospital thinking I was anemic. I was. I had lost half my blood supply and had signs of early congestive heart failure. I'm not kidding though when I tell you I was functioning, even working, right up until that point. Everyone was floored. The next morning after receiving 4 blood transfusions, a ct scan was done and that's when the tumor and mets to the liver and lungs were found. It is still unbelievable to me as I look very healthy, just much thinner now.

[franski]

Hi I am new here......can you tell me how to get acquainted with other stage 3 cancer patients. I am a nurse and in the first 2 weeks of chemo/rad tx...with a long tx plan to go....How can I start a blog I am so sorry to hear what you are going thru...God Bless You and your family....Fran

[frugal]

@franski- just start a new thread from the main forum page. Introduce yourself, many people will come forward to welcome you and offer whatever info they can.

loveofmylife-
I'm heartbroken just reading your story. It seems so many young families here on the forum and elsewhere are beset by such tragedy. I can't say much about your husband's medical situation, there are others here better qualified for that. But, I can say that in my life, I have seen God's plan. For me it's always been after the fact that I realized there was a purpose in what happened to me or those around me. The last few years have been difficult for me in that regard, things have just seemed to go from bad to worse on a regular basis and I can't see the point in any of it. But, I do my best to trust that one day I will know the purpose in it all. I will be praying for you, your husband and your girls. I know that right now it must be hard to find any consolation in your heart. Please know that there is value in the love you you all show each other, value in the love shown to you by friends and strangers alike. And, immeasurable value in the simple fact that you, your husband, and your daughters ARE a family. May God bless and keep you all,
John

[loveofmylife]

Trish thanks so much for the reply. So Sorry for everything you and your family are going thru. MANY HEARTFELT PRAYERS YOUR WAY...LOTS OF LOVE...LOTS OF GROUP HUGS TOO!! My Tom looks so wonderful. In fact, he saw his Indy oncologist yesterday, and he told him this is the best Tom has ever looked. Tom does not have a CEA marker, never worked at the beginning or does not now, always shows 3.5.(HEALTHY RIGHT) He told Tom that he so glad he feels wonderful and to continue doing what he is currently doing. As I stated earlier, we go back to Texas end of the month, I just wanted indy onc to go ahead and run ct test so we no more now. I no that things could have have changed for the better since his Oct 28th liver and lung surgury, but I refuse to quit hoping and praying that somehow we get our miracle as i also hope and pray happens for you and others too. Praying that Toms liver is regrowing and is healthy and that somehow those new lung lesions have disappeared. It still frazzles me that this cancer has a mind of its own, after all the treatments and surguries, it still seems to be the one in control.I just want to feel positive, but I am so afraid of the results on Feb.1st. I am trying to go back thru all the post on this site and try to get to know everyone. Its just so hard, some stories just about put me under and others I am so happy for. I have seen where people have posted A NEW DRUG IS JUST AROUND THE CORNER FOR METASTATIC COLORECTAL PATIENTS, but how long is that. I so want Tom on that, like RIGHT NOW. Yesterday, was the first day that I did not cry once,WOW, because I prayed to the Good LORD Above, that previous night, and felt such a burden lifted that I actually slept thru the night and felt good...that never happens for I am constantly waking up and checking on my Tom, just to look at him, hear him breathe, and to touch him. As you can tell today, is not a good day, it pouring down rain outside and inside with my tears. Why cant the doctors find a cure for this, for all cancer. I just dont understand. when I went thru all my cancer, I just kept telling myself I could beat it, I was going to help Tom raise our girls, and I never would have imagined that just a couple of years later, Tom would face cancer to. My oldest is 14, and she is just terrified that she is next. My other two, 11 and 7, says daddy is gonna be fine, he will beat cancer too. Trying to keep the child like faith, but seems we get tested constantly.I need to feel out the info so everyone has a better understanding of toms illness. Anyway, just being on this site has helped somewhat for now and THANKS to everyone. Wishing warmest blessings to each and everyone. Toms wife