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Not Good News

Posts: 425
Joined: Jan 2005

Oh my-here we go again..after progression with 1)folfiri/avastin 2)xeloda and oxaliplatin 2)erbitux/irinotecan we are now progressing again (silly word..progress used to mean a good thing)...anyway..more and new lung mets in addition to constant liver mets...oh- it gets better(sarcasm!!)...Peter now has to deal with a huge blood clot in his IVC (inferior vena cava) brought on by "aranesp" prescribed to increase his hemoglobin(side effect)...so..what is next 1) re-challenge oxaliplatin 2) clinical trails (prob just phase 1..also known as being a lab rat 3) alternative....ie IV vitamin C..perhaps DCA?
On a much brighter side..he has no pain..and has been fighting this beast for over 3 years and has NOT given up...any and all suggestions very welcome..

katienavs's picture
Posts: 88
Joined: Nov 2006

I'm so sorry to read this news. I don't have any suggestions but I know if he has been fighting for three years and hasn't given up that he has an amazing spirit and anything is possible. My thoughts are with you and Peter.

jams67's picture
Posts: 927
Joined: May 2006

I can understand why you are so very tried of being on the battlefield with the beast. You are a huge part in Peter's positive attitude and stamina and sometimes you just need to get away for awhile.
No pain is really great with all he has going on. I had a clot in the superior vena cava at the end of my port. They could put vile stuff in, but couldn't take blood out. The clot caused a lot of pain and swelling so I hope he continues to be pain free.
Jo Ann

Limey's picture
Posts: 447
Joined: Mar 2004

Hi Bev. I know it is hard. what helps me is I know I am only One day away from the cure. I am hopeful that day comes soon. being pain free is huge. I can certainly relate to that.

My port was giving me much problems and I had to go into hoepital for a few hours to have TPA put in. this softens the clot and usually clears the end of the prots where it is getting stuck. Now standard protocol for me is to flush with saline and pack with TPA instead of Heperin. so far it has worked.
Stay positive and never give up.
I am thinking of you both.

betina61's picture
Posts: 644
Joined: Aug 2006

I am very sorry with the news about your husband,but I am sure that as he doesnt't have any pain that will keep him in a better spirit to continue his fight,and remember that you need to have faith that for God nothing is impossible. I'll will be praying for both of you.

goldfinch's picture
Posts: 737
Joined: Oct 2003

I have no suggestions for you. This is something you guys will have to decide. But I am happy that he is pain free. That makes life so much better. Good luck with your decisions and Keep positive!

Posts: 1961
Joined: Aug 2003

Dear Bev,
I am sorry to hear this news. I admire the fact that you are already considering the options available. And I am very happy that Peter is not experiencing pain, and is still in figher-mode. I don't really have any suggestions, but I sure am pulling for you.

nudgie's picture
Posts: 1483
Joined: Sep 2006

Have you spoken to other cancer centers, like Mayo, MD Anderson, John Hopkins, etc for second and third opinions? If not, I would highly recommend.

It is not easy trying to have a positive attitude in times like these, but just having it gets us through.

I am saying a prayer right now, pause........ AMEN!

vinny3's picture
Posts: 933
Joined: Jun 2006

Bev, I'm sorry to hear the news but relieved that he is not having pain. I would suggest you contact Lisa P ( scouty) and Emily (2bhealed) to see what their regimens are. They have had great success becoming NED using natural means. I'm not suggesting stopping other efforts such as chemo but it wouldn't hurt to include the natural treatments as well.


Posts: 1048
Joined: Jan 2007

Hi Bev, I'm so sorry it isn't going better for Peter and you. I'm glad Peter is not experiencing any pain and he has maintained his will to not give up. That's so important. Just a couple thoughts which you've probably already investigated. Have you investigated theraspheres for the liver if he has numerous liver mets and are there any surgical/rfa options for the lung mets? and as someone said, have you gone to a major cancer center for a consult? I assume he is on blood thinners now for the clot. My hubby now on lovenox 2x per day for dvt in leg due to the avastin, but I believe the avastin has really helped to cut blood supply to the liver mets causing shrinkage. Fortunately the injections are working as he Cant' take coumadin with the xeloda and lovenox supposedly may have some cancer fighting properties. After being told for 8 mos now , chemo is our only option, he is now scheduled to have a liver resection in October due to the shrinkage in mets and my instance at repeatedly visiting the surgeon and sending info to other docs for opinions, so it's important to not give up. Good news can come when you least expect it. I will be saying a special prayer. Keep us posted and God Bless.

Posts: 405
Joined: Mar 2007

I'm so sorry the news isn't better, but I'm happy to hear that he has no pain and his attitude is huge in fighting this beast. I wish I had some good suggestions for you. I am guessing that you have already gotten 2nd and 3rd opinions, but if not, keep looking until you find the answers that you need. My thoughts and prayers are with you and Peter.


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