Okay, I will try to make this to the point, as I have a tendency to rant and make novels.
I just spoke with my to-be chemo nurse at the Lombardi Cancer Center, which is 2 hours away from my house. I was going to participate in a clinical trial study, which was suggested by my doc since I was stage II. They would test my tissue to see what the results are for tumor markers. Based on those results, I would be placed into different categories, they would just monitor me and no chemo, or 12 cycles of Avastin, Oxaliplatin, Leucovorin and 5FU, I would get 4 there then come home with a 46 hour pump. The pump cannot be discharged by myself or a home health nurse, I would have to have them take it out up there (which means another trip) because it's a clinical study and they have to deal with their own equipment, no one else. Total 6 months, 600 hours.
My doctor stated when discussing this option with him that females have been on it with little or no side affects and they're waiting to see the effects on fertility, but some have resumed their menstrual cycles in as little as 3 months after treatment commenced. The nurse told me that no females are in this clinical trial so she couldn't answer the question, but the Avastin and Oxaliplatin would have some type of result on the cycle as well as fertility because they're platinum based.
If I had it down here, I think they do 5FU for sure and Leucovorin, no Oxaliplatin or Avastin. I have put a call into my Oncologist to see what they're official treatment plan would be.
Factors of consideration for the trial-If I did it and got put in the low risk group, I would be monitored without any chemotherapy, I don't want to not have any, because of it being Stage II and growing so fast, even though it was well to moderately differientated-which I know is a slow growing and the best type of cancer to have, this cancer went through all four walls and was 3 cm in less than 2 years, I don't want to chance they're being any undetectable cancer cells out there (Not to mention, having lost my uncle and mother to Stage II colon cancer that spread down the road after their surgerical ressections). My father has lung cancer, and although completely different, he never had any post op chemo after his lung was removed and it came back a year and a half later. I don't want to be thinking a year from now, I wish I'd of done it because they find something somewhere. I would have to go up there twice every other week, which is time off of work when I return, but the good thing is I would know what my tumor tested for in terms of markers, however, I could just spend 850 bucks and find out myself.
If I had chemo down here, then it would be less chemo for sure, and I don't know about the duration, up the road it would be 12 weeks, every other week, so 6 months, 600 hours total.
What would you do if you were trying to make the decision?
I have to let them know by tomorrow because of the time constraint for having the tissue tested after surgery.
I don't guess any of us would know for sure what we would do until we faced this, but I think with your family history if it were me I would do the chemo and forget about the clinical trials. This is just my opinion, tho. I know you have a difficult decission to make. I will keep you in my thoughts and prayers. Good luck with what ever decission you make.
Would it be possible for you to get treatment with all four chemo drugs from your local oncologist? That way you would definitely be receiving treatment. In the unlikely event that the cancer recurs you won't be tormented by wouda, coulda, shouldas and you will be doing the utmost possible to defeat and quash any microscopic remaining dormant cancer cells. Sometimes a local oncologist will proceed with a protocol suggested by a major cancer center, under their supervision so that you can have treatment closer to home but be reassured by oversight from an experienced team.
Christy...I'm a little confused as to where you are in your treatment. Have you already had surgery to remove the tumor? I am a stage IIIc currently doing the Folfox as adjavant treatment following my surgery. I am not sure that Folfox is yet approved for stage two...but because of the success with stage 3 Five year survival rates there are efforts such as the trial you're being offered to make it a standard for some stage II as well. I have some additional comments depending on your reply regarding having surgery already or not.
Cristy...reviewed your posts...see you had surgery early last month. If it was me...I would make sure I'm getting some chemo and not a placebo in some trial. As to whether or not you could be given the Oxaliplatin locally in addition to 5FU and Leucovorin I'm not sure....also...if it's not approved protocol...maybe your insurance wouldn't cover it. Avastin right now is usually only used when the cancer has mets. The 5FU is better than nothing and...if you can have your local onc get the oxaliplatin added and it's covered by ins great... then go for it.
I am writing from a hotel room... couldn't resist checking in with you guys. First off... good news, NO METS TO THE LUNG, YEAH!!!!
Ok, back to you... I want to first say that chemo is an individual choice, But, since you're asking for opinions, I'll give you mine. Keep in mind though that this is YOUR decision regarding chemo.
Ok, with that said, if it were me, I would NOT be doing a study right now. You are a stage 3 (I don't recall if you are 3+ if any nodes were positive). Regardless, I would only consider doing a trial if I was running out of options. You can easily do an adjuvant regimen of oxaliplatin/5FU/Leucorvin. Ii would personally keep Avastin and Irinotecan in my back pocket, in the event I presented with mets. Why risk it getting everything now and only saving Irinotecan in case you develop mets? There is a chance you might not get ANYTHING too which is REALLY scary as a stage 3 or 3+. My answer, as you can tell, would be "NO THANKS." You are very young in close to the same boat as me (same if you had >4 nodes positive). I would do an aggressive regimen and add oxaliplatin to the mix of the old 5FU cocktail. You want to make sure you are doing what you can to kill any stragglers, all the while preserving an "if needed" option.
I just would not take that risk, or use up that many options. But, again, it's YOUR decision.
All my Best,
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Christy..CD has most accurately and completely stated my personal view as well. Cancer Dad...I don't know if you remember me or not but you were most helpful in answering a post I made regarding questions for my surgeon...back in Jan. I am so happy to hear of you good news...while I haven't posted until tonight...I have much to share as to how things have been going so far and will do so very soon. Staged out at T3, N2, M0...sound familiar? Good luck to you Christy...Osage
Cancer dad....that is wonderful news! What a relief! Osage, I was thinking we had not heard from several members of this board and you are one of them!! Please post and keep us updated. I hope you are doing well.
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
That's terrific that there are no mets to the lung!!!
Next month will be 3 years since my surgery for colon cancer, (Dukes C, 2 positive nodes). According to the literature 80% of recurrences happen by then, so there is some sense of relief, yet I know this beast can rear its ugly head again, 4, 5 or more years later, so scans and tests will always incur fear of what the results might reveal.
My treatment consisted of 5FU and Leucovorin for 26 weeks. When Oxaliplaten was approved for use in Stage 3, I remember my onc saying he thought that the side effects of a platinum based chemotherapy should be taken into consideration when used on a relatively young person that did not have metastatic cancer, because of the potential of developing future cancers 10, 15 or 20 years later, such as lymphoma as a result of treatment with Oxaliplaten, as has been the case with Cisplaten. However, the point of chemo is to assure that one will be around 15 or so years later and then if there are new challenges, at least there was an additional decade or more of survival that may or may not have resulted if that particular chemo wasn't used.
Cancer Dad how do you figure Christy's stage as stage III, since although the tumor ate through the outer wall, it did not appear in any of the tested lymph nodes?
First off-Amazing news Cancer Dad, I am so happy for you, estactically happy, when I read that I just said out loud Thank God. I am so happy things are going better for you and that the scan was clear, I know it was weighing heavily-as expected on your mind. Leslie-I think CD thought I was Stage 3, he couldn't accurately remember, but it's just a guess.
I thank/think ALL of you for your responses. At first I thought the clinical trial was the best bet for me, having read a book by Pete Teeley who is a long term colon cancer survivor of Stage 3, and he did a clinical trial. You're totally right, I never thought about placebo's. I don't think that my doctor would steer me wrong and you're right, my pet scan showed the cancer localized in the cecum of my large intestine, but in the same token, it is a teaching hospital and they do want to learn more.
My pathology report stated low-grade (well to moderately differentiated) T3, N0, MX-which means metastasis cannot be assessed, however, my surgeon said it's really M0-none. My margins were uninvolved on the proximal, distal and circumferential, the lymphatic system was indeterminate and it was absent in the venous. Additional pathological findings-appendix showes no significant abnormality. One lymph node shows a necrotic center, but no tumor or well-defined granulomas. Special stains pending will be reported as an addendum (I need to get that addendum).
I think I would just be happy with a round of something straight forward for now just to kill off any undetectable cancer cells that might be lurking somewhere, which I know might even be a slim chance, because it didn't spread to my lymph nodes, so I wonder.
WARNING-Deviation coming up-A large part of this decision is also how it's going to affect my fertility, I don't want to be on horomone replacements should my cycle not resume, not to mention, with chemotherapy regardless I will have to give up the option of having children, which is harder for me to deal with than the cancer. I know that might sound extremely strange to some, but it is really taking it's toll on me. Children are the ultimate immortality and I will never be able to have one, and then if I did, it could have this terrible gene, what mother would want to pass that onto a child?
I have thought about this and your responses. I made an appt to speak with my local oncologist down here to see what his thoughts are, I will see what he recommends as treatment and then go from there, once I have all the information, I think I will make my choice, but I am already leaning towards staying down this way, and just having a surgeon put the port in locally too. Has anyone had any problems with surgeons rather than radiologists putting in ports? I wish it didn't have to go in my chest wall, I am having a hard enough time dealing with this incision on my abdomen, sorry if I seem like a whiny baby, I know worrying about an incision and more scars is shallow.
Thank you all again for your inputs, they truly mean the world to me.
Hi Christy, you aren't a "whiny baby". My husband's surgeon put in his port and there are two very tiny, barely noticable scars. He has a bump where the port is and that is all. Believe me, the port is a god-send. We have seen so many people that have to be stuck every time and sometimes it takes so many tries that I just want to cry for them.
Personally I think you are handling this all very well. Take care and my thoughts and prayers are with you.
You are correct in assuming that I remembered you as stage 3... sorry. My faux paux. Thank you Leslie for bringing it up. This only HEIGHTENS my concerns about doing the trial. But, remember Christy... this is YOUR decision.
BTW I don't think you sound whiny at all!
On the baby front... There are things that we pass on to our offspring all the time... allergies, asthma, pre-dispositions to heart disease, etc. We didn't even know this just a decade ago. And they may have a cure just a decade from now. I do NOT think it's selfish at all to want a baby. Why don't you and your partner speak with a geneticist to determine the liklihood of passing the gene? As I recall, you weren't specifically tested yet either. I'm not too sure if I'm right on that one, either????? I do try to remember!!!
There are also other options... adoption, egg donation, surrogacy. Don't just give up on your dreams because of this... EVERYONE has their problems. Without getting into a religious debate... that is NOT what this forum is for...But, they now test in utero-- within the first few months of development, they can take the fluid and test for genetic mutations. Just a few suggestions for you to think over.
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Thank you CD for your response regarding everything! Mwah to you
Leslie-I called and spoke with my gyno, she stated that she was positive that it wasn't cancerous because of the sonogram results, that she wanted to remonitor in 6 weeks with ultrasound, that cysts under 6 cm are typical and should just be monitored. She told me if I wanted to get a second opinion, she would understand, I told her where I was coming from, and we're sort of acquanitances outside the office, she stated she encouraged second opinions if it made her patients feel better, which meant a lot to me. She's always been there for us and willing to respond, so I am rested. I don't have the pain as often and I just started my cycle, TMI, I know guys sorry, but I think it may have taken care of itself already, or so I hope. Sorry I went all spastic on you guys.
hiswife-thanks for telling me I am not whining, it means a lot, even if I do still feel it and all, it still means a lot just having you guys around for support.
I seriously cannot thank you guys enough, you listen to my rants and support me and give me great insight, I am thankful to have this group of listeners and friends on my side. You are all 's.