My turn for bad news – chemo didn’t work

Well, all…thank you so much for the support.

I had a very, very long day on Thur with beginning blood tests, 90 mins of infusion, then repeated blood tests throughout the day (13 total). I was at the hospital from 8:00 am to 5:15 pm, and was told by the staff that the researcher would have preferred I be there until 8pm, but that wasn’t going to happen due to not enough staff being there either!

As it turns out, the drs. did a “gene-typing” and found that my body processes things (toxins, meds, etc.) through my system very quickly. So, that would explain why the previous chemos didn’t work at shrinking or keeping the tumors from returning. The chemo didn’t stay in my body long enough to do any damage to the cancer.

The clinical trial is in about it’s 9th month, 1st phase. I benefit from not being at the beginning of the trial in that I get a higher dose than would have been at the start. At the end of the day, my drs. saw me and said they were confident that I would benefit from the higher dose in the trial. Now all I can do is wait.

I had a 24 hr blood test the next day, then one next week, and another the following week. Chemo will be every 3 weeks again. After the 3rd chemo, they will do CT scans to see what the chemo has done, and hopefully there will be good news.

As always, remaining realistically optimistic is the key. My drs. are being positive, so I can only be that way. Attitude is everything.

The biggest side-effects of this chemo is diarrhea and tiredness. Possible hair loss is expected, but that is the least that I’m concerned about. I’ve had a slow weekend and been tired with little appetite, but that isn’t too bad. Work starts again tomorrow, so I’ve been trying to conserve energy. I go again to the hospital for a blood test on Tues (due to conflicts I had on Thur).

Thanks again for everyone’s support. I’ll keep in touch with further sided-effects if any. Maybe this will be it. After I was told that I process things through my body very quickly, it kinda made sense. I was always the one that took more tylenol or advil than I was supposed to because it didn’t work (just seemed to not stay in my body for the time it was supposed to). It all makes more sense now. I wish that this gene-typing had been done at the beginning, but then again there was no reason to believe this would happen. Let’s just hope now that they know, it will work out.

Linda Z.

Thanks Lisa

That helps me get a little more of a time-line to work with.

Linda

Thanks everyone for all of your kind thoughts and help.

Lisa – I remember your post about the lung mets. How long has it been since they found it? I have 2 tumors and (if I remember) they are both about 1 cm each with also plenty of “stars” in both lungs. Have your doctors given you any kind of plan for what to do? I know that’s probably opening myself up for hearing the worst, but knowledge is the best medicine right?

Well, I met with my Univ of Chgo Oncologist, Dr. Polite. He was actually very much so toward me (polite), but had an attitude a mile wide to everyone else around him. I guess it must come with the territory of having lots of students following you around looking up to you. Still doesn’t excuse the attitude (or not calling your patients!) in my book. He saw me with 6 students with him.

Since I knew a lot, lot more this visit, it seemed like he responded to me better. He answered every question I had and then some. He opened up the CT scans to explain what I saw. Basically, since there has been new growth of new tumors, it would be likely that there might be other cells lurking to pop out at any time too. He felt that treating me systemically was the proper road to take due to the lung tumors, as well as the liver tumors.

I agreed to participate in a clinical trial at the Univ. Hosp. involving Irinotecan CPT-11 (Camptosar) chemo. This chemo is supposed to break down the cell to prevent duplicating in a very different way than the other chemos I’ve had. After 8 wks, then another set of CT’s to see if it’s done any good.

The video that Gavin just put on here, showed a little bit about the cells replicating. It helped me to understand when my Onc. was describing how this new chemo breaks down the cells. For the cell to multiply, it “untwists”, and in this untwisting process, the chemo makes the 2 strands brittle, causing it to break and not able to multiply.

That’s the plan for now, so we’ll see where that takes me. I asked about why not surgery now, as well as radiation, PDT and Proton Beam Therapy. All just treated the tumors, not the “stars” where there could be new things waiting to happen in the lungs, as well as new tumors that could occur in the liver.

This will also give me time to maybe have another consult with another Dr., or Onc. and check with my insurance again about referrals, as well as with my work’s HR dept. to check on my benefits when my sick time and vac. run out (which they may soon). I have no symptoms at all right now, so I think I could probably use this time to get more information while at least trying another therapy in the meantime.

Marion,
I have heard of Dr. Roggin. My son’s name is Kevin so I remember him too because of his name. I may have recently seen his bio on the Univ. website. Thanks for the reminder. I will check on that possible consult. I know it doesn’t hurt to get second and third (or fourth) opinions if needed.

The news from the Onc. was not what I wanted to hear. I would have preferred to have surgery again, thinking they will “get it out”, but it makes sense to me that even after going through the surgery, I may still get another tumor, unless they can stop the progression with something systemic.

I also asked about Tarceva as I’ve read a few had success with that med too. My Onc. didn’t feel it was as successful with CC as with other cancers, but he held it out as something to possibly use in the future if the Irinotecan wasn’t successful. All I needed to know is that at least one member here had success with it, and I will ask to try it.

I will start the clinical trials this Thurs – July 15th. It will be a 90 min. infusion once every 3 weeks. The 1st day I will be there from 8am – 5:30 p.m. when they will take a lot of blood tests monitoring how I am processing the chemo. If I process it well and it passes through my system fast, they will up the dose. During the first treatment period (3 weeks), I will need to go to the Univ. Hosp each week for blood tests. After that, I will just need to be there for the infusion.

Other than the travelling (about 2 hours during rush hour – less if there’s not as much traffic), and that first very long day, it doesn’t seem too bad. I’m hopefully (or is it realistically?) optimistic (isn’t that what you say Lainy?) Both sound good.

Thanks again for all your support.

Linda