More Pain

The pains haven't gone away and have been really severe today. I will have mild pain for some time then I will have a lingering, sharp pain in my lower abdomen. This has made it excruciating to pass gas or have a movement. Neither of which have provided much relief. I had an early initial movement that was small and didn't provide any relief. I decided to call the nurses to see what they suggest and initially they suggest getting a CT, but I'm not really willing to do that if it's just something I ate. They said they would call back after speaking with my doctor. A bit later I had the urge to have another movement and quite painfully did that. That was a bit of a relief, so I just continued to bear with the occasional sharp pains and general discomfort that I've been feeling. I also began having night sweats which I associate with this. Also, when I urinate I notice some pain and it is painful to squeeze it out. In all this I'm not noticing any signs of bleeding, just pain and discomfort.

After the blood work

After yesterdays blood work I was given the all clear by my nurses and have been pretty good. I was feeling quite a bit better until today. I've started to have a lot of persistant lower abdominal pains that feel very strange. Feels a little like I'm backed up or bloated, but I haven't been able to reduce it using gas-x or having movements. Could have been something I ate, but with my condition, I'm paranoid.

Blood work and growing concerns

It's been over a week since my Trabectedin was administered and now is the time to get blood work checked. I go in early and it's pretty quick. The results are good and my oncology nurses are happy to tell me to just watch for any signs of bleeding, everything else is in normal range. I'm not surprised, I've felt pretty good since Friday.

I'm not convinced the treatment is having much effect, the swelling in my leg returned and has progressed. I'm feeling some pains that I'm convinced are the metastases.

I would like the treatment to work, but it isn't a cure and I'm afraid to waste time on it. The nurse who administered the pump indicated some patients have been on it for over 2 years... That to me sounds like hell; going up every 21 days, being sick for 6 more days, progressively getting better and still running the risk of any number of complications and no cure. That's only if the treatment shows any sign of working, if not, then I guess my options are down to 2.

Which I'm kind of leaning toward at this point because I'm not convinced the treatment is having any affect. My leg is swollen to a greater degree than it has ever been and it's painful and cumbersome to move. I'm very frustrated because I feel like I am steadily losing the things I loved to do; difficult and painful to run, to ride my bike, to play soccer, to play ultimate...

Weekend after Trabectedin

After I get home from the Trabectedin disconnect, a long drive later, I am so tired I just go to bed. I pretty much stay there for the next couple days since it is the weekend and I don't feel good.

I'm still not feeling good by Monday, so I'm concerned about the impact on work in the future, but today is a holiday, so I have a reprieve. I make it to work, late, on Tuesday and Wednesday; the rest of the week I'm well enough for normal arrival... No other issues.

I had some response to the treatment, I think, when I notice that the swelling in my leg has gone down. I'm a bit optimistic of this result and hope it continues.

First day of Yondelis

Yondelis, aka Trabectedin, is administered over 24 hour continuous injection/drip. I get hooked up to a pump on Friday afternoon and come back to the clinic for a disconnect on Saturday. Following that I get a shot of pegfilgrastem(Nulasta) and get sent on my way.

The hook up is fine, and I get a nifty little bag to carry my pump around in. Pretty soon after I am hooked up I am already not feeling to good, but I think that is mostly because I'm frustrated and annoyed. I go meet up with my pal Allan and we go run some errands and get some food. We head back to his place and work on setting up his home theatre. He says I can stay on the nights that I am getting treatment, so that is a relief. He said he'll make me a key...

The next day, I sleep in, feeling bad, and maybe a bit sick. I ignore feeling sick and just lounge around Allan's apartment. Suddenly, I'm feeling sick and run to the bathroom to vomit. No food, so it's not much, but I go ahead and take the antinausea medicine and am able to get through the rest of the day without any problems.

I go back to clinic to get disconnected and then begin the drive straight home.

Not my type

The typing required for the clinical trial is HLA typing. I get the results from the doctor that Friday after the tests and now am face with choosing one of the other 3 options. I feel like there aren't many options, so I just go with what he likes, Yondellis. This will be administered every 21 days for 24 hours.

Yondellis is a drug that has been used with some success in Europe for years, 12, but it is still not fully approved for use in the US. I had researched it somewhat in the past, but because you seem to have to jump through the hoops of standard care practices I couldn't get it... Now I can.

That began on the 17th of February.

Adria and Ifos Fail

So, some catch up here first. About October/November of last year I noticed my leg developing some swelling and I got a hydrocele. I ignored it for the most part since my surgeon indicated I could experience swelling after the surgery and the two symptoms weren't too bothersome. The swelling in my leg progressed and I went to a local doc who suspected DVT. He ordered CT and US of my pelvis and leg. The US was negative for DVT, but the CT showed a mass, possibly scar tissue in the area of previous excisions. I went ahead and got in touch with my oncologists and was finally able to get up to them in January.

They did an MR and determined that what had previously been ruled scar tissue was more tumor. Especially with comparison to the new CT and my symptoms. Symptoms persist and progressed, by this time my calf was beginning to show signs of swelling also. Elevation is ineffective... During discussion of the MR images, my surgeon suggests a 50/50 chance that a hemipelvectomy may be necessary if they aren't able to get clean margins from an excision. At this time the tumor is shown to be wrapped around my iliac blood vessels and nerves. The result is the swelling I'm experiencing and potential loss of motor control of the leg...

A hemipelvectomy is not something I could love with so I ask for a PET scan before proceeding and begin asking my oncologist for alternatives, ie clinical trials. Specifically, I asked about immunotheraputic options and some of the clinical trials run there and at the NIH. The results of the PET scan show metasticies, so the hemipelvectomy is off the table, thank goodness. Because of my requests, my oncologist sends me to my new oncologist, an immunotherapy researcher. In meeting with him he presents 4 options after discussing the failure of Adria and Ifos; Gemcitabine & docetaxel, pazabonib, Yondellis, or maybe his clinical trial. I have to first have a specific typing for his trial so we choose to test for that...test to be performed immediately, then decisions.