Treatment starts on June 16th...Clinical Trial

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Jbeckerdite
Jbeckerdite Member Posts: 6
edited March 2014 in Colorectal Cancer #1
Hello everyone.

It's been a rough two weeks since I've been diagnosed...the roller coaster of emotions and all the trips to the hospital for tests and appointments have been really draining, both physically and emotionally. But my husband and I are plodding through.

The doctors have not given me a stage for my cancer, but it is rectal, and it has gone through the wall a little bit. My lymph nodes were slightly enlarged (.7cm) but they said they generally don't worry about them too much unless they are over 1cm. The lesion is between 2 and 3cm and is about 11 cm up. Due to the possible lymph node involvement, I'll be starting chemo/radiation on June 16th if all goes well.

I had my power-port put in Friday morning. Tomorrow I'll go in for my radiation planning. I also have to go in for an MRI because the CT scan showed what the doctors called a cyst on my pancreas. I'm worried that it's going to turn out to be not just a cycst, but my oncologist at Mass General said he really wasn't that worried about it. I'm hoping and hoping he's right.

I've also signed up to be considered for a clinical trial that involves 5-FU 24/7, Avastin infusion every other Monday and a daily drug called Erlotinib that I would take orally. They have had really good results with patients on this combo and recommended it to me. I'm worried about the side effects of course. But, I want to try and do everything I possibly can to kick this thing so I figured I'd go for it.

Regarding the cyst...I would think that if it was a cancer it would have glowed on the PET scan, wouldn't it? And my PET scan did come back with a "NO EVIDENCE OF METATASIC DISEASE" report. I'm just feeling kind of trigger happy...almost as if I'll never hear any good news again. I know that silly, but it's floating around in my head.

Just wanted to update everyone. Thanks for listening!

Comments

  • dn220
    dn220 Member Posts: 79 Member
    #2
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    My rectal mass when I had my PET scan was 10cm but it didnt even show up on my PET scan along with the 3 nodes that were cancerous, none of that showed up so don't trust the PET scan. Mine was done with the traveling scan which I have since found out is not reliable so if yours was done by one that doesnt move around then u might be alright. I am on the folfox 6 regime which includes 5fu I get my treatments every 2 weeks, I wear a pump home that administers the 5fu over 48 hours and then the pump is off and it starts all over 2 weeks later. I have had severe stomach trouble with it. Very bad diarrhea that was uncontrollable with nausea and weakness, dehydration and severe weight loss, they held my treatment for 1 week and decreased the amount of 5fu the next treatment. It was not as bad but I still had diarrhea that was uncontrollable. They are sending me back to my gastroenterologist because now they think there is something else going on. I have pain in my left upper abd, just below my breast and black tarry stool so they think I'm bleeding somewhere. I go in the morning and I am so worried about it. Anyway, all these doctor appts can be so tiring, I know that I hated going to the doctor all the time, but keep on hanging in there, you sound like you are doing pretty good with it. Good luck with the trial. I hope it doesnt make u so sick.
    Deb
  • PGLGreg
    PGLGreg Member Posts: 731
    #3
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    A rash as a side-effect of the erlotinib might not be a bad thing. The Wikipedia article on that drug suggests that a rash may be associated with increased survival (though it does not mention treating rectal cancer).
    Yes, the PET scan results seem very encouraging.
    -Greg
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #4
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    Hi,
    It sounds like you have a pretty good prognosis to me. It is true, what Deb said, that a PET scan can give a false negative on lesions less than 1cm in size, but in my experience I don't recall any cases of colon cancer spreading to the pancreas. The main places it will go is to the liver and/or lungs. I have a cyst on my spleen I think (or maybe it's on my liver?) at any rate, it is benign.
    I am not familiar with Erinotinib, so I cannot say what side effects you may have. The only problem I had with 5-FU was that I developed a watery eye due to scarring of the tear ducts. In most people this resolves on its own eventually, but if your eye starts watering a lot I would certainly mention it to your doctors.
    Well, good luck with getting through this upcoming week and your treatments.
    Best wishes,
    Susan H.
  • Melanie781
    Melanie781 Member Posts: 33
    #5
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    My husband was diagnosed with rectal cancer December '07. He was treated with chemo (oral Xeloda) and radiation for 25 treatments during the months of Jan and Feb this year. He had the surgery to remove his rectum and anus on April 15 and had his right groin lymph node removed on April 23 (while still in the hospital from the first surgery.) They found it was Stage 3, with 4 out of 15 positive nodes and 1 out of 7 positive nodes near the rt-groin site. Due to surgery complications, he hasn't started his adjuvant chemotherapy yet. But, when he does, he will be treated with oral Xeloda (14 days on and 7 days off) with intravenous Oxaliplatin at the beginning of each cycle. He tolerated the Xeloda very well before, so we are hoping it will be okay the second time around and he won't need a port. I have read in quite a few places that this is the preferred treatment for Stage 3 colorectal cancer. Our oncologist thought about adding Avastin, but decided to wait and see how the other chemo works first. Everything I have read suggest that Avastin should be used for Stage 4 cancer or Stage 3 that has later metastisized. Have you thought about not going the clinical trial route and go with the tried and tested treatment options? Also, when you do have the surgery, I suggest they have a plastic surgeon sew up the back. Our hospital suggested this and his bottom almost looks normal. He still has a crack :o)
  • apache4
    apache4 Member Posts: 272 Member
    #6
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    In your post you mention the trial and that they were going to use Erlotinib. Have you looked it up on the internet? It is one of the new agents that intefere with the EGFR (Epridermal Growth Factor Receptor) and apparently is similar to Erbitux and Vectibix. As I understand it, these drugs are only used if your tumor expresses the EGFR. In my case, it was right on the biopsy report. I would ask about that. Also, I agree with Melanie about maybe going the "standard" of treatment route. Why mess with something tried and true? My understanding is that trials are for when one runs out of the standard options. I don't want to be negative, but I care. Where are you being treated? I was dx. Stage IV colon cancer, mets to liver,in 6/06. 'am on the third option for standard of care and still doing OK. Right now I have CPT-11, Avastin and Erbitux. Rash is manageable with anitbiotic cream and I am very lucky that when I had the 5FU and Folfiri I tolerated it well with few problems. My best to you. I will be thinking of you and interested in what you find out. Linda
  • Jbeckerdite
    Jbeckerdite Member Posts: 6
    #7
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    I am being treated at Massachusetts General Hospital, and this trial is for patients with "locally advanced rectal cancer". I am having 3 infusions of Avastin (every other Monday, one for 90 min, the next one at 60 min and the next one at 30 min), and the Erlotinib daily.

    They told me that this was a very promising combination so far. They are on track to having 60% of patients having their cancer completely gone before they even go in for surgery...and even if that happens to no one else for the rest of the trial they are at 30%.

    I didn't view the clinical trial as a last resort. I viewed it as an opportunity to get rid of this once and for all. I asked how people have tolerated the treatment, and they said that so far it has been tolerated fairly well. They went over all the risk factors with me etc. but they will be watching me very closely. And if I don't react well, they will pull me off the drugs. That's why I decided to give it a shot.

    I'm also still getting the standard...5-FU, so it's not like I'm not going to be getting something in the standard treatment that I wouldn't have gotten.

    I have to trust that my doctors know what they are talking about. It a very good cancer center.
  • apache4
    apache4 Member Posts: 272 Member
    #8
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    Jbeckerdite said:

    I am being treated at Massachusetts General Hospital, and this trial is for patients with "locally advanced rectal cancer". I am having 3 infusions of Avastin (every other Monday, one for 90 min, the next one at 60 min and the next one at 30 min), and the Erlotinib daily.

    They told me that this was a very promising combination so far. They are on track to having 60% of patients having their cancer completely gone before they even go in for surgery...and even if that happens to no one else for the rest of the trial they are at 30%.

    I didn't view the clinical trial as a last resort. I viewed it as an opportunity to get rid of this once and for all. I asked how people have tolerated the treatment, and they said that so far it has been tolerated fairly well. They went over all the risk factors with me etc. but they will be watching me very closely. And if I don't react well, they will pull me off the drugs. That's why I decided to give it a shot.

    I'm also still getting the standard...5-FU, so it's not like I'm not going to be getting something in the standard treatment that I wouldn't have gotten.

    I have to trust that my doctors know what they are talking about. It a very good cancer center.

    Yes, you do have to trust your doctors otherwise it would be much more difficult to go through treatment. Thanks for replying as all information is interesting to consider. My best to you.
  • Kanort
    Kanort Member Posts: 1,272 Member
    #9
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    Hi,

    The first couple of weeks after diagnosis are some of the most difficult. Your attitude sounds wonderful, and you are arming yourself with a very important ally.....information!!!!

    Keep us posted on your progress, and I'm sending you well wishes.

    Hugs,

    Kay
  • Melanie781
    Melanie781 Member Posts: 33
    #10
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    Jbeckerdite said:

    I am being treated at Massachusetts General Hospital, and this trial is for patients with "locally advanced rectal cancer". I am having 3 infusions of Avastin (every other Monday, one for 90 min, the next one at 60 min and the next one at 30 min), and the Erlotinib daily.

    They told me that this was a very promising combination so far. They are on track to having 60% of patients having their cancer completely gone before they even go in for surgery...and even if that happens to no one else for the rest of the trial they are at 30%.

    I didn't view the clinical trial as a last resort. I viewed it as an opportunity to get rid of this once and for all. I asked how people have tolerated the treatment, and they said that so far it has been tolerated fairly well. They went over all the risk factors with me etc. but they will be watching me very closely. And if I don't react well, they will pull me off the drugs. That's why I decided to give it a shot.

    I'm also still getting the standard...5-FU, so it's not like I'm not going to be getting something in the standard treatment that I wouldn't have gotten.

    I have to trust that my doctors know what they are talking about. It a very good cancer center.

    Wow, I'm going to show this information to our Oncologist. Maybe this is a treatment that might help my husband in the future. ~Melanie

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