My turn for bad news – chemo didn’t work
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Linda…I don’t remember whether this ever came up in our conversation, but have you had a consultation ever with Dr. Kevin Roggin at the University of Chicago Medical Center? He is a surgeon quite familiar with this disease. Possibly, you can have a phone conference with him regarding your situation. Just a thought. Hang in there and good luck today.
Best wishes are coming your way,
MarionLinda,
Sorry to hear this latest news from you. And I am sorry to hear of the troubles you are having with your doctor. Hopefully you will get some good news today from the university of Chicago onc, you deserve that. I can’t help you with your lung mets question, but hopefully someone else will be able to share their experiences of this.
Best wishes,
Gavin
Linda,
There are several people here with lung mets but for the life of me, I cant come up with a name. I am sure they will pop in soon and offer something.I am so frustrated for you. You should not have to get the information they way you did. URGH. Sometimes doctors are so clueless. I think you should change doctors if you feel that is right. If you stop having faith in your doctor, you cant be happy with your treatment or keep your spirits up. I couldnt change my doctor since geographically the next onc was 3 hours away, so instead when I had problems with mine, my doctor, nurse, Hans and I and our psychologist had a large joint meeting about what I wanted and expected and things have gone great since then. Sometimes I think we need to tell doctors how much we want to fight and how aggressive we want to be. We have seen on this board that not everyone chooses the same path and perhaps your doctor is just confused on what path you want to take.
Good luck finding a new treatment plan.
Kris
Dear Linda – this is not the news we would have wanted to hear but I’m glad you were able to spit the words out & tell us. You are very much in my thoughts; your wonderful spirit & drive & determination are an inspiration & I send all my best wishes for tomorrow’s appointment. It may be pouring at the moment, but I can see you’re still out there dancing in it.
Julia x
Linda,
My prayers will be with you tomorrow.
KathyThese insurance issues about where you can and cannot go are very frustrating!
Thanks, Lainy. I can really use a spirit lifter and you can do it. I’ll let you all know what happens tomorrow.
Linda Z.
Linda, I know not much about the lungs. Just wanted to let you know you are in our thoughts. As for some doctors….. but we feel very blessed with ours, we are lucky. Hope some of it rubs off on this post to you!
Well, I’ve been taking a lot of time getting caught up on all the posts here, and just when I think I will post, I run out of time. Then I check back in on everyone’s news, and have to go again.
I can’t put it off. Not that I don’t want to tell about what’s going on (quite the opposite), just that putting it to words make it more real for me.
To catch up some of you, I was diagnosed in Mar 09 and had resection surgery removing 40% of my liver (left lobe) and gallbladder, Apr 1st, 09. I had 1 lymph node involved with cancer and a single tumor in the right lobe was “burned”. My University of Chicago surgeon said he was “very confident” that he got clear margins on everything. I started “preventative” chemo (Gemzar/Cisplatin) Jun 09 and subsequent CT’s showed no signs of cancer. 2nd set of CTs months later showed possible mets to the lungs (numerous particles in both lungs), and the “burned” tumor returned, with a 2nd new tumor appearing.
I started on another chemo regiment of Oxalyplatin with Xeloda pills. Follow-up CT scans late June showed both tumors had doubled in size, a 3rd tumor is now visible in the liver, and the “particles” in the lungs were now measurable tumors in each lung (1 in each lung 1 cm each) confirming mets to the lungs. The Radiologist also mentioned something showing on a kidney, but didn’t think it was too “remarkable”.
Of course I didn’t hear this from any of my doctors AGAIN. I had to wait for CT scans to be approved (the Univ of Chgo Onc wanted them done there, but ins. wouldn’t allow it and had to stay with my medical group locally). I finished chemo on Jun 1, requested the referral 2 wks prior to that in May, and it took 4 weeks to get scans done & get another referral for the Onc. to “discuss” my case.
When I had the scans done, knowing I would be going to a Univ. of Chgo Onc., I requested a copy of the scans. I got them 2 days after the scans and was told I would hear from a Dr. by that date too. When I did finally see the local Onc. (who just administered the chemo that the Chicago onc. recommended), he still didn’t tell me what was going on. I opened up the scan disk and read the Rad’s report to find this out. That is how I found out I had cholangio. to begin with! I read the biopsy & MRI scan reports!
My next appointment with the Univ of Chgo Onc. is tomorrow morning. Radiation therapy was not done after surgery because they thought “it wasn’t necessary due to clear margins”. Then when the cancer returned, they felt it was too risky to other organs to do it then. The onc. didn’t mention too many options other than the chemo I just completed and a clinical trial of chemo.
It may be time to look for a new, more aggressive Onc. Has anyone with lung mets. had it successfully treated, or is there nothing to be done for mets. to the lungs? This kinda took the wind out of my sails. (No pun intended) I feel optimistic about treating the liver tumors with other treatments, but don’t know anything about the lungs.
There I go getting so lengthy again. I’ll let everyone know what the Onc. says tomorrow after my appt. To top it off….I just came back from my PCP where he treated me for an upper respiratory infection (cough, sore throat and slight fever) that started over the weekend! When it rains, it pours.
Linda Z.
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