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Bob's test results not good! Help!

bsrules
Posts: 296
Joined: Mar 2004

Hello Everyone!! I promised you guys that I would let you know how Bob made out with his CT Scan. Well, we were hoping for good news but we got the wind taken out of our sails. The CT results showed that this new chemo regiment he was on is not working and that the cancer is growing. We were so hoping that after all the reports and results of this drugs Avastin doing such a good job and with Bob feeling better the results would be good. Well, we had a gutt feeling as when the Doctor came in the room and Bob asked him well, his face told the whole story. He wants him to start on the last approved drug that is left called Erbitux. He said that he wasn't giving up on him yet as he looks good. Bob said what difference does it make if I look good in a box. I thought that my heart was going to be torn out. He also asked him what if this drug doesn't work then what next. He said that they would do research to see if there are any new drugs available in the clinical trials. Needless to say he is VERY drpressed. He was ready to celebrate the good new at the car show but now he said he doesn't even care if he goes now. He was working so hard getting the cars ready. He was also very happy to get greasy and dirty again. He came home and just sat on the couch. He wouldn't talk to me. I don't know how to get him through this one. He has been down before but nothing like this!! I tried to be strong for him while in the office but broke down a little bit which made me mad at myself. I don't know what to do to help him through this point right now. He said that all the positive thinking and prayers just don't seem to want to help him. He keeps saying what did he do wrong in his life to deserve this. He was alway a kind and helpful person to who ever needed him.

I'm sorry that I have been rambling on. I am just beside myself with worry. I just don't know what to do for him right now. I know that he has to process this in his own way but the way he is thinking it is scaring me alot!!!!!

Can anyone give me even a little advise as to how to help him through this very rough spot?

Has anyone taken or have any info on this new drug ERBITUX? They said that he will have the treatments 1 day a week. It will take 2 hours and then 1 hour of observation before he can leave. He will not be coming home with the pump this time around. I am worried about this first new treatment as he doesn't want me to go with him. I am starting back to work on the Tuesday after Labor day and he wants me to go to work. I am so worried about him right now and I hate to have something happen to him with me not being there.!!!

Does anyone know of or has heard of any drugs being worked on that are in clinical trials?

Again, SORRY to go on like this!!!! Any help or info that anyone might have would be GREATLY appreicated!!!!!! Please keep praying for my hubby!!! Best Wishes and prayers to all of you!!!! Sue

carmen07
Posts: 120
Joined: Apr 2004

Sue
So sorry about your hubby's test results and I can't blame you guys for being down right now.
There is a patient in the Clinic with my husband now that is being treated with Erbitux and is doing much better with this drug. His cancer did not respond to the Avastin and it is doing wonders for him. I read in Time Magazine (june 21) that it is used for Advanced Colon Cancer - it blocks the action of epidermal growth factors.
I believe he developed a rash on his face, but they have it under control now.
You have every right to be down now, but your options are not over and the fight is not over.
No two patients are alike and small differences in genetic codes can make a difference of how a cancer drug will work.
My prayers are with both of you now.

mopar
Posts: 1954
Joined: Apr 2003

Sue:
I'm so sorry for what you are going through - both of you. I am a 4-year OVCA survivor. Recently, my Mom was diagnosed with colon cancer with mets to the liver, lungs and thyroid. She had a colon resection, a port put in, and had her first treatment with Erbitux and Camptosar last Thursday. She came through it just wonderfully. However, she needed a blood transfusion the next day due to low blood count. She suffered a stroke during the transfusion and is now in the hospital in rehab for a few weeks. After that, I don't know what we will be doing in terms of her care. The right side is affected, and she is doing well in rehab. However, she is 80 years old (lives alone and was never sick in her life). I can't move her on my own, and it's just me that would be able to do this. So, we are looking at some of the less acceptable options.

Anyway, her doctor was involved in the studies this year with the newer drugs, including Erbitux. This is what he feels is the most promising. Her cycle is 2 weeks on, 1 week off. She will have 6 cycles. The rash is a good sign that the drug is working. Please hang in there. I understand all the feelings, fears, etc. But as I went through my ordeal I relied so much on scripture, prayer, and the support of others. The way I see it is everyone has to deal with something in life. The question is, what are you going to do with it? I chose to do the best I could, rely on the Lord, and rely on the strength He gave me to get through it, whatever the end result. Believe me, it wasn't easy. But everytime I got a fearful feeling, or feeling of defeat I remembered the scripture, "He has not given us a spirit of fear, but of POWER, LOVE AND A SOUND MIND!"

My thoughts and prayers are with you and your husband. Try the Erbitux. DON'T GIVE UP!

Monika

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Dear Sue,

You may want to check out www.cancerdecisions.com The doctor on there was in research with Memorial Sloan-Kettering. He did an article about Avastin and Erbitux a while back.

If you are open to the thought there are many ggod alternatives that have healed cancer. At this point it's worth a try don't you think?

A ggod book to get you introduced to the idea is:

A Cancer Battle Plan by Anne Frahm.

She went through every single treatment that was offered and was sent home to "get her affairs in order". She discovered other healing modalities and knocked the cancer outta her!! If anything, it is a good encouraging read.

I am so sorry that Bob's news was not good. I walked that road with my sister and it hits you right in the gut. Because I did walk that road with my sister when she was only 30 (she died at 33) I had to take a different path when I got my dx. I have been cancer free for three years being Stage 3 lymph pos zero mets and NO chemo.

You are in my prayers.

peace, emily

ramona41's picture
ramona41
Posts: 72
Joined: Jul 2004

saying a prayer for you both right now.i am new to this disease and dont have any experiences with drugs to share..but i will share my heart and prayers.. ramona

deneenb
Posts: 130
Joined: Jun 2004

Sue,

I am relatively new to the board and my Dad just started his treatment so I really can't offer any advice with regard to the Erbitux. However, I certainly know how it feels to get news that you didn't want to get. We just got the same thing on Monday with my Dad's Pet scan results.

I will add you and your husband to my prayers today. I pray many times a day for my father and for others in this situation. Don't give up hope. Erbitux may be the answer to the prayer. Also, I strongly believe that Emily has the right idea with nutrition and supplements and other alternatives. My Dad is stage 4 so it's a bit too scary to try to beat it without some chemo but the oncologist said his philosophy about anti-oxidants is "they can't hurt". Previously we were hearing from the nurses not to use too many. We are scheduled to see a nutritionist next week and I will be making an appointment for a naturopathathic healer as well.

As others have said in response to other messages I have read "this is a bump in the road" albeit a big bump, we can get over big bumps.

Best Wishes,
Deneen

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dear Sue,

I don't have anything to add about Erbitux, but please know that your family will be in my heart and my prayers.

Hopefully, Erbitux and, possibly, some complimentary approaches will be Bob's answer to this latest struggle.

Thinking of you both,

Kay

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

I can't say anything about the drug because I had radiation and 5FU, but I can say something about the feelings he's having. He's in shock right now. After he's had a little while to process what he's heard, he'll be ready to fight. I had cancer in July, 2003 and had surgery. Thought I was through with it and it came back in Jan. 2004. My first thoughts were-no treatment, I'll just live till I die. Then after I had time to think about it, I knew I had to fight, whatever It took. He will do the same. And the others are right, prayers will get you through this, whatever might be. I went through a very tough struggle(if you look back on past posts you will see) but God and prayers and my good friends here got me through it. Keep coming here and posting. Any questions you have, they can help. I'll add you to my ever growing prayer list.
Love and prayers, Judy(grandma047)

jana11
Posts: 708
Joined: May 2004

I wanted to tell you that you and your family are constantly in my thoughts.

DO NOT beat yourself up for crying!!!!!! You need to allow yourself to express your feelings and break down every so often! It is not selfish, it is necessary.

You and Bob both seem like wonderful caring people. Just continue to be yourselves, and give a little time to adjust. Again, I really think support groups are where its at. We are a support group, but Bob needs one too!

Best of luck, jana

ChrisE
Posts: 8
Joined: Jul 2004

Hello Sue,

My husband has also not responded to the Folfox and Avastin they gave him--he got worse. They are trying something else now (CPT-11 instead of Oxipilatin) and I have thought about 'what if we run out of drug options' too.

I think Emily gave some good advice and I've thought in those terms also. I know my husband will want to hang in there with traditional medicine as long as they want to try--that is what he wants.

If that fails, I'm going to try to convince him to do the types of things Emily advised and to go back to a Naturopath. The Naturopaths protocol
was:

Vegetarian diet
Detox herbs for the small intestine
Paw Paw cell regulator (by Nature's Sunshine)(cut off nourishment supply to cancer cells)
Lymphatic drainage
Immune Stimulator (by Nature's Sunshine)
C-Herb (by NuCell labs) (works on tumor elmination)
Noni Juice
Probiotics
Protease Enzymes (by Nature's Sunshine)

Wishing you healing Sue.
Chris

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

hi!

To this I would add maitake mushrooms and Essiac Tea and juicing fresh organic veggies and watching your pH blance staying out of the acid side of the spectrum.

peace, emily

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