we've run out of chemos..

[kimlon57]

iTS BEEN A WHILE SINCE i'VE CHECKED THE MESSAGE BOARDS SO PLEASE FORGIVE ME IF THIS TOPIC HAS BEEN COVERED RECENTLY. Sorry about the caps. My husband has stage IV with mets to the liver and lungs.Surgery has not been an option for him so palliive chemo is all they could offer. Today we got the results of his recent scan and it showed a subtle progression in his lungs and his liver looked the same as last scan although the dr thinks there may be more there than the scan showed because he has not been feeling well for several weeks. The doctor informed us today that he doesn't have anymore combinations of the different drugs to try so he checking Johns Hopkins this week for clinical trials.I was wondering if any of you may be in a trial now and how you are doing? My husband feels as if theres no hope left for him and I was hoping maybe some of you could put his mind at rest. Thak you so much in advance for any replys and God Bless you all.

Kim

[Lee]

Hi Kim,

I am very sorry to hear about your husband. wamo's husband also has cancer, and Paul (husband) will be starting a clinical trial very shortly. She has the information on one of the threads here, I will see if I can find it.

I'm glad to read your checking out John Hopkin's, MD Anderson is another good hospital. Sometimes the major cancer centers/hospitals are on the leading edge of new procedures. I hope there is someone out there who can help your husband.

Best of luck,

Lee

[Lee]

O.K. wamo has a thread titled "Clinical Trial-8/15 Update on husband Paul". It is still on the first page, but it is closer to the bottom. Maybe you can hook up with her, and she might be able to provide some information.

Best luck to you. Please keep up posted.

Lee

[justsing]

I know that John's Hopkins is one of the medical centers that is very far along on immunotherapy -- cancer vaccine -- research. They may not have an open trial for colon cancer going on, but if you snoop around, you may be able to find one that is either ramping up or is running but not accepting new patients. If you do find one, then you can ask your primary docs there to petition that you be given the treatment under "compassionate care." That means that you won't be included in their statistics, but you can potentially have access to some cutting edge treatment options.

So be really nosy in the waiting room with other patients, and chat up the nurses and see what you can discover.

Good luck!!!!

[weisssoccermom]

http://www.clinicaltrials.gov/ct2/show/ ... +IV&rank=4

http://www.clinicaltrials.gov/ct2/show/ ... IV&rank=10

http://www.clinicaltrials.gov/ct2/show/ ... IV&rank=16

Here are links to three studies that MIGHT be beneficial to you. I would also suggest that you go to http://www.clinicaltrials.gov and under the search area type in colorectal cancer.

Then refine your search to add stage IV or hasn't responded and cut the list down.

At least it can also give you a place to start and some ideas.

Jaynee

[bonnie b]

Hi Kim,
My husband Joe is also Stage 1V and unresectable and not responding to chemo any more after 2 years. He had Sir Spheres to the liver and then followed by a clinical trial at the Univ. of Colo. He is on PXD101 and Velcade. I found a small study (17 patients) about this combo and it was summarized as modest anti-tumor activity. He also had a liver biopsy sent for molecular profiling. This trial is one of the class of drugs that the profiling suggested that his tumor might respond to. He actually feels better - its been 3 months since the last round of oxy.
He'll have a scan at the end of Aug. and we are hoping for no growth and maybe some shrinkage. Have hope - there still seem to be treatments out there !

[sandym]

Try to check out MD Anderson, I know they have a bunch of clinicals going on now because I checked them out before coming here. I am receiving my first round of chemo right now and can't think real straight but will try to find the link tomorrow or ask my oncologist here about it before I go home Thursday. It is a great place to be. They just got me thru a chemo drug that I have been very allergic to and I hope that it works for me. I am not out of therapies as I am early in treatment right now. Please try to get him in down here, I have nothing but good things to say about this place and the docs are great. Hang in there!

[PammySue_51]

Please have him also check into other therapies like Sir-Spheres for the liver mets and cyber-knife for the lung mets. I may be headed to clinical trials at some point, but I'm doing Sir-Spheres first for the liver and then Cyber-Knife or some such for the lung. It gives me a bit of a chemo break.

[John603]

Kim,

Check out a drug called DAVANAT. I think it is currently in a Stage 3 clinical trial in Israel, but you may be able to ask for compassionate care usage. The company that makes it is Pro Pharmaceuticals in Massachusetts. They had a very successful Stage 2 trial in the US for late stage colon cancer patients.

John

[Mike in Maine]

Please know that there is ALWAYS hope. No matter what else you may here from inexperienced doctors & staff. This board is full of stage IV survivors who were given no hope! Please Go tell your husband right now that there is hope and he still has great chances of managing his cancer and living a relatively normal life for many years to come. If there is one thing I have learned in the last 5 months is that feeling despair is a bad place to be and can make things much worse.


Would the stage IV survivors please step forward?

[PammySue_51]

Has your husband checked into Sir-Spheres for the liver mets and Cyber Knife or something else for the lung mets. I was recently told by my oncologist that there wasn't really any other chemo options at their facility and I was referred to a specialist in clinical trials. Before I do that, I decided to check into Sir-Spheres. I get my first of one or two treatments on September 2nd. Beware though, your oncologist may not even know about Sir-Spheres even though it's been around for a while. He may have to refer himself.

[kimlon57]

Thank you all so much for all the information. Sir spheres and cyber knife are not options for my husband. We've already been to Hopkins, Sloan Kettering and Uni of md. and we got the same answers from them all. I will be checking into all information given. Thanks for the encouraging words. Kim

[PammySue_51]

The only thing I'd like to add is that my oncologist was pushing me towards more chemo in the form of clinical trials. While I may end up doing this at some point, I referred myself for Sir-Spheres. I may look into immunotherapy at some point, as well. My best to you and your husband, whatever you decide. It seems like all cancer doctors have their own "niche" and don't tend to stray too far from that. However, it sounds like you have been extremely proactive in visiting the major cancer centers.

[MissKim]

Kimlon,

I just wanted you to know that there are other options. I visited Dr. Heinz-Josef Lenz at University Southern California while I was on FOLFIRI and my cancer was not progressing. He told me of some kidney cancer drugs (Sutent, Temsirolimus)that have shown to help colon cancer patients. The trick is getting your insurance to pay for the kidney cancer drugs -- since they are FDA approved for kidney cancer only. My oncology office has a patient advocacy program where they apply to the drug companies to donate these drugs -- we are in that process now. Dr. Lenz also recommended Gemcitabine with either Xeloda or 5-Fu. I am now at the point where I need to switch to one of his recommendations and I have an appointment with him on Sept. 8 to get a suggestion on which method to go. He also had clinical trials that he suggested to me. It is definitely a scary place to be. I am there right now. I REFUSE to give up.

Sincerely,
Miss Kim
dx 6/2003 stage 4 cc
5+ YEARS SURVIVOR

[bradyr]

just curious why SIRT isn't an optoin... did he have radiation at sometime to the abdomen? I ask because there is a similar procedrue called HAI, that doesn't use radioactivity, but a concerntrated dose of chemo, which may get reactions when standard chemo doesn't work. there is another directed liver treatment as well.

also, of course not mentioned was RFA or cyroablation which depending upon the number or size of tumors might be an option for either the lung and/or the liver. has your husband also been ruled out for these, even to try and take out the largest or most agressive (even if all can't be targeted)

and of course all of these are fully FDA approved - not anything in trials....