Took weekend off

I'm pretty convinced that all the troubles I've been having are a result of the pazopanib, so I stopped taking it to alleviate that. In some ways it got better, in other ways it didn't, and I was still in pain when I saw my doctor Tuesday. He's not convinced it's the pazopanib and really wants me to start/stay on it for a while. We talked about the issues, but didn't really come up with any solutions. I asked for pain meds and got that, but I'm hesitant to take those and start a new set of side effects that I have to manage. He ordered a CT to see if there was anything going on in my abdomen; there was nothing conclusive about what could be causing the pain, but he is still not convinced it's the drug. The CT did show, as I suspected, that at least one tumor had a "marked" response to the pazopanib, so we really want me to get back on it. I think it might be some kind of infection but really the coincidence with me starting on the drugs is hard to ignore.

I go in for blood work either today or tomorrow. I started on a reduced dosage of the pazopanib again. I feel ok as long as I just sit still, which although the med might be working, is not the quality of life I was hoping for.

Pazopanib Day 3

Wow, ok, so now this stuff is really starting to kick in. My pains at what I know to be tumor sites persisted for the rest of the day and seemed to get a bit worse, so I loafed around home the rest of the day. I took some tylenol for the pain, it did ok, but I don't think it was enough...I ended up falling asleep a bit early for me and woke up for my dose a bit later. After I took that dose I went to bed and was able to get to sleep, but woke up at 1:30ish with some of the worst stomach pain I've felt, as well as the pain I seem to be feeling at the tumor sites. I kept going over in my mind what number I'd give the pain since the nurses always ask that...7 or 8 I think... I was able to finally get back to sleep an hour later. I got up for work like usual, but ran late, still having a lot of pain in my abdomen and feeling like I might vomit. I didn't have diarrhea this morning, but a bit of it last night. The only thing really getting to me currently is the pains. One good thing so far, that leads me to believe it's helping, is the swelling in my leg has gone down a bit.

In other news, the cryoablation specialist I found was able to look at my scans and determined I am not a good candidate. There is too much tumor. I forgot to ask if they could just remove some of the tumors, not all, but really in the medical community that doesn't seem to be they way they want to do things... It's frustrating, but I'm on to other leads and I think this pazopanib is working for me. I got on a waitlist for a clinical trial in SFO that was looking good to me...

Pazopanib day 2

Well, after most of the day was fine, I started to get a headache towards the end of the day. I took aspirin for that and it helped. After that, just some abdominal pain which seems to be located near my tumors... I took my dose again last night before bed. This time I woke up several times having to go to the bathroom bad. Then in the morning, I had diarrhea, one of the most common adverse reactions. So far the rest of today has been fine.

Starting Pazopanib(Votrient)

Finally was able to get on Votrient. A bit of a chore to get that going from the manufacturer and insurance. But, I now have it in my possession. Last night I took my first dose, before bed. Woke up fine, no problems yet, but I'm paranoid about every little thing being a side effect or something. I have read of some weird side effects, but nothing major. We'll just keep trucking...

Clinical attempt

Unfortunately, not able to get on the clinical trial in Canada. My Dr. referred me, but the trial is closed; per British Columbia CA(BCCA), the company is having financial difficulties. I wasn't clear on whether that is in reference to the BCCA or the actual drug manufaturer(sponsor). The drug was for an HDAC inhibitor that has shown good results and great tolerability. Many HDACi's seem to be well tolerated.

That lead to my brother finding out about a clinical HDACi drug called PCI-24781. I looked up some information on it and it will be tested in combination with Pazopanib in a trial in SF. I'm going to see if I can get on that one. It seems to have a large enrollment option and starts soon. Since I'm getting scripted for Pazopanib, I'm cautiously optimistic I can get on it. It's Phase 1, so it's open label... NCT01543763 http://clinicaltrials.gov/ct2/show/NCT01543763

Other news; what a fiasco to get on Pazopanib... I was told I could get the script filled locally, then the manufacturer informed the pharmacy they can't/won't ship to them. I ended up spending over an hour on hold and transferring around the manufactures help lines and my insurance helplines before I was able to get my insurance to send the drug to me directly. They just need the script from my Dr. Should get that today...

Cryoablation; I received a call from them, the had a problem with the cd's I provided them, so I'm going to have to get new ones from my Dr. I'm dragging my feet on that...

Most recent results

As I suspected, the trebectedin had no effect and my tumors progressed. Seemed to me like a lot.

My doctor is concerned that one of the tumors is compressing the ureter from my right kidney and causing some swelling of the kidney. He spoke with a urologist who said the swelling wasn't that great at this time, but it should be watched. If it becomes a problem they would need to put a stint in it to hold the ureter open...

Since the trebectedin didn't work, I asked to be put on pazopanib. I got confirmation that I can have that script for only 75$ co/pay. That's not bad, I guess.

One thing my doctor mentioned to me was an HDAC trial going on in Canada. I think he might have mentioned it before, but anyway... I called a hospital in Vancouver about that and they said they needed a referral, so I've asked for that from my doctor. He said he'd provide that. I'm pretty hopeful I can get on that because I've read that it's been pretty effective. Also, I'm kind of scrambling to get on it since, according to the trial posting on clinicaltrials.gov, it will be wrapping up soon.

Shamefully, I think I ignored the Canadian trial because it's not in the states. I figured they wouldn't treat me... I really need to learn to not answer questions that I haven't asked yet...

next steps:
hope for this clinical in Vancouver.
otherwise, Pazopanib and keep trying for cryoablation...

Last round of trebectadin

After the last round of Trebectadin I've been pretty good. None of the abdominal pain has recurred and in general I've been handling the drug well. Had some nose bleeds the resolved quickly and quite a bit of tiredness the week following the treatment, but I just make sure and get my rest... lots of it.

To my perception I don't think the drug is having any affect. I still have a lot of swelling and it seems worse or the same as before. I've really been getting out of shape lately; I went for a long walk yesterday and hiking up a moderate incline I could feel the swelling increasing in my leg and it was really cumbersome/tiresome to move my leg.

I'm going to keep posting up things I want to try, mostly as a reminder to me.

pazopanib - this was one of the 3 next options that my doctor offered me, as well as Gemcidtabine w/ docetaxil, and Trebectadin. I've read more and more about people using Pazopanib and having some success with it, although not lasting. I'm interested in it because of the way it works, and it's short term efficacy in reducing tumor size is something I really want. The swelling and reduced mobility is really frustrating, I think if the tumor shrinks, some of that could be relieved, if only for a bit. It works through antiangiogenesis, which is something I've been interested in from other readings. I'd prefer squalamine, but that is only clinical at this time for other cancer types so I doubt I can get that. Otherwise, there is a supplement I'm considering trying that indicates it's a natural source of squalamine...

Cryo-ablation - I've read that this is an option covered by insurance and I'm trying to pursue it with a specialist. My doctor doesn't know anything about it.

Still same old symptoms

Still having the same symptoms the I mentioned before, but I took tylenol and that made it fine for the day. I'm not sure what is causing the problems, but I'm expecting the worse... The nurses said if it was unbearable to go ahead and get a CT. It hasn't been totally unbearable and since I see them this Friday, I'll just wait and see how that all goes. I'm concerned these problems I've been having might prevent my from getting further therapy, but on the other hand, I'm not convinced it's working anyway.

I've been looking at some alternative therapies and read the book "Outsmart Your Cancer" which has some seemingly good information in it of different ways you can fight cancer. I have decided to try the Cantron(cancell/protocell) therapy because it is relatively inexpensive and there have been many proponents of it. Also, it seems pretty easy to take.

In standard therapies, I've still got the 2 chemo therapies they my doctor has suggest. Also, I've been reading about cryoablation and think that could be really good for me at this point. I plan to see if I can get that done either at the U or if I can get referred to someone who can/will do it.

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.