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Some good news & Clinical Trials ???

donnare
Posts: 266
Joined: Jun 2009

Hi all,

We met with my husband's oncologist for the first time yesterday. The PET scan showed no more than we already know about - just multiple (approx 11) mets to the liver - no other organs involved so far. They gave him some new meds for the nausea and decided not to start chemo until he is a little stronger - approx 3-4 weeks. He has lost 32 lbs in a month, and is weak right now, so overall, I am very relieved and hopeful. The ultimate goal is for the chemo to shrink the liver mets to the point where he is a candidate for resection, but the immediate goal is to just get everything under control.

Today was the first day he has not vomited and he has eaten more today than he has all week, and is actually feeling better and a little hungry. Overall, I am feeling cautiously optimistic. It is wonderful to see him feeling better. These days I am celebrating ANYTHING even remotely positive.

Have a question - he was offered standard chemo(folfox) or a clinical trial: Phase II Study of Treatment Selection Based Upon Tumor Thymidylate Synthase (TS) Expression in Previously Untreated Patients with Metastatic Colorectal Cancer. Something like if TS is high he will not get 5-FU but will get bevacizumab with oxaliplatin and irinotecan instead. Anyone have any info or opinions about this clinical trial, clinical trials in general or these drugs? Are they safe, what is a Phase II study? He has to let them know and we will be asking these question when he meets with the oncologist again next Tuesday. Just trying to gather some info ahead of time. He hasn't made a decision and I don't have a clue as to how to advise him.

Oh, and just our luck, we really liked the oncologist and were very comfortable with him and he informed us at the end of the appt. that he is leaving in 2 weeks, so my husband will be assigned to someone else. He saw the look of terror on my face and assured me that my husband's treatment plan will be in place by the time he leaves, and that he will be turned over to a very able colleague.

Thanks for any insights/info/opinions anyone has.

Donna

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Donna,here is the definition of phase II clinical trial that I googled: "PHASE II TRIALS: Controlled clinical studies conducted to evaluate the effectiveness of the drug for a particular indication or indications in patients with the disease or condition under study and to determine the common short-term side effects and risks."

I don't know the chemo medications that you mentioned about,but you can go to chemocare.com to check the link of "chemotherapy drugs",this way you can find out if the medications have been aprroved by FDA.

A few weeks ago,the oncologist also suggested my hubby to join a phase III clinical trial,we did lots of research and the drugs are routine drugs and my hubby and I are both in scientific field,so my hubby wanted to take the trial to contribute some data to research,this way,people in future can benifit from it.But after all the checks,it turned out my hubby is not a candidate because they only want a certain size of tumor in rectum in stage II,so my hubby has to take routine treatment.Anyway please do some research on the drugs for clinical trial and there is no rush to make a decision before all your questions get answered.Best wishes to you and your husband and good luck with it.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Donna
I have not been in any of those...I was on Oxaliplatin for about eight months and it is a particularly harsh drug. It is a 3rd generation chemo drug, the latest and greatest, and is platinum metal based. Neuropathy is a major side effect with sensitivity to cold both touching cold or frozen objects, or drinking cool or cold liquids.

I can talk more to you about that if you would like. I can't speak about the other 2 drugs, because I have not taken them, but the one that starts with the Irin, I've read on other posts, that is tolerable, but others will need to chime in on that one.

If it gets to a liver resection, ask them about RFA, radio frequency ablation to burn out the liver tumors if those are operable. I had RFA and its success rate is comparable to or better than traditional liver resection, but it all depends on the surgeon, but ask anyway.

And lastly for the Oxy, ask them if they can include Magnesium Sulfate, which eased the cold symptoms tremendously when I was doing Oxy.

Hope some of this can help point you right and give you some ammo when you see the doctor.

All my best - Craig

donnare
Posts: 266
Joined: Jun 2009

Thanks for the info Craig - I will ask about the Magnesium Sulfate as well as RFA. He is still trying to decide whether to participate in the clinical trial. They aren't starting chemo for a few weeks so he has some time and we will be asking more questions tomorrow when we meet with his oncologist again.

Thanks again and all the best to you also - I enjoy reading your posts and was not surprised to hear you were the recipient of a random act of kindness. I think if you put goodness out there, it is returned to you - karma, if you will, and from your posts I hear the compassion and kindness you have towards others.

Donna

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Donna

I wanted to say that you are certainly welcome! I hope that I was able to provide you some info that you can use and questions that you can ask.

I've often wondered if I'm making any kind of difference out there at all...and then I'll get a post reply from someone such as yourself with such nice words and genuine comments and it makes me feel warm inside and I realize why I am trying to do this.

It is getting feedback from people like you that has made my fight worthwhile and if I'm able to help anyone, then that is reason enough to keep going. I want to feel like I can make some kind of difference in the world and on the board and maybe God is keeping me around some more so that I can do just that.

Thank you for making my day...and keep me posted. I'm hoping that your husband is a candidate for the procedures and drugs I took, because I think they were effective.

I just started my 6th year and my "hold" pattern could be changing again, but won't know 'till I meet the new doctor. Until then, I use my energy to tell everyone what I've learned and been through in the sincere hopes that it helps someone.

Your post really touched me and I can't thank you enough for that.

All my best - Craig

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Donna

I almost forgot - ask them about CyberKnife. It is considered a radio surgery, but is a robotic arm that "surgically" cuts the liver tumor out. It is highly concentrate radiation given over 3-5 treatments up to 2 hours at a time. They place radioactive seed markers in your liver in and around the tumor. This allows the CyberKnife to track where those seed markers so it knows where to cut. The liver surgeon and radiation oncologist would put the measurements and game plan together, it is programmed into the computer, and CyberKnife will go to work.

They outfit you with a special vest that is hooked up to the machine and "compensates" for your breathing, so that the laser stays in direct contact with the tumor and only cuts on it instead of "moving" around to get other tissue.

It's space age stuff. I had the RFA but a little of the tumor was left and CyberKnife locally removed the tumor after 3 sessions.

Please ask about this as well....it's an important tool and highly effective.

Ok, talk to you soon.

-Craig

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