Update on the hormone treatment

I read up a bit on the hormone treatment and wanted to clarify that things may not be totally bleak. I guess about 30% of people respond well to hormone therapy (in terms of slowing growth, not killing the cancer) so if I respond well, I may hang in there for a while yet. So, again, the June scan should reveal how well the hormone therapy works for me. Am I in the 30% -- or the other 70%? Time will tell.

Turned Down for Clinical Trial

I got a call from my oncologist's office yesterday and it only took a day to get turned down for the clinical trial he spoke of the day before. I figured I wouldn't be a good candidate. So the hormone therapy really is my last ditch treatment, except for whatever radiation I can do for areas that can still be zapped for symptom relief.

I guess the June scans will give me an idea of my longevity if there has been a change in the tumor size then.

Maybe I should think about traveling while I still feel decent.

No More Chemo

I saw my oncologist this morning to get the CT Scan results and essentially after 6 rounds of chemo and radiation to my hip and head, the best we accomplished is "stable" disease. In other words, no new growth. I can't continue on with that chemo since the accumulated effects will get worse and the good being accomplished is limited. So I will continue with the hormone therapy, a therapy that is decades old and doesn't work that well or that long. The doctor is going to try to get me considered for a clinical trial on a drug that works by cutting off the blood supply to tumors. It has not been studied on endometrial cancer so it seems unlikely they will accept me. If they are going to consider it, I will have to do a bunch of additional testing to see if I am eligible. The drug is VERY expensive and not covered by insurance, but if accepted into the trial, it will be free.

We also asked about surgery and it sounds like he has given up on that because the chemo didn't do the job of substantially shrinking the tumors. There is no point in putting me though a complex, risky surgery when I would still have bulky tumors elsewhere that can't be ressected.

So I think we're coming to the end of the line on treatment options. If I don't get into the clinical trial, all we can do now is try to keep me feeling as healthy as I can for as long as I can. The plan is to scan again in a couple months and see how the hormone therapy is working on it's own. I can still do radiation to the hip and head again. As far as I know, that is not an option for the spleen. The couple months will give me a chance to recover some strength for the battle ahead. We did not talk time frames at all. That may come up next time when we see what's happened without the chemo.

So the good news is a two month break from treatment. Maybe I'll get some hair back so I can lose the hat. (yay!) The bad news... my time is limited... I just don't know how limited. It has been a slow growing cancer. Maybe that means it will take longer. I'm sure they will do palliative care where they can to relieve symptoms.

Speaking of which, there is no indication the tumor in my hip is growing so my odd hip (butt really) discomfort may just be related to the hip bone thinning due to radiation.

MRI results

Got the news on the MRI from last Friday and it's not the best, but it's still pretty good news. She can't detect any shrinkage, but it has definitely stopped growing. The doctor said that if the radiation stops the growth that it will generally not resume growing for another 6 - 12 months. Initially she said she wanted to wait 4 months and MRI it again. After talking it through, she decided to MRI it in 2 months. If it's shrunk some, away from the optic nerve (which has been pushed off the the side quite a bit, she'll probably want to do the cyberknife treatment then since she could maximum dose it with less risk. If it's holding steady, she'll probably wait another 2 months. At least that was my understanding. Bottom line -- no more head radiation until June. Yay!

I asked her about the hip issues I've been having and she said there is definitely nothing in that area in the Jan CT scan so it's hard to say what's going on. The CT scan on Monday might be able to say what the problem is. I have NO problems at all with the groin area that was bothering me BEFORE radiation and chemo. I have just been having some "tightness" in my glutemous maximous area. I've also been having more pain after being in bed for about 4 hours instead of the usual 6 hours. My the morning, my side is really achy. So I suspect the spleen thing may be the real problem. I just started taking megace on Saturday and that tends to have a lot of side effects so I wonder if it could be related to that.

So, by Wednesday I'll hopefully have a fuller picture of where I'm at. I'm really hoping for a break from chemo. I'd like to see some hair back now that the weather is warming up. The hat is getting HOT. I feel bad that such a small consideration -- hair -- is my focus when finding effective treatment should be my priority. :)

So now we wait until Wednesday to see what to do about the hip and the spleen tumors.

MRI

The procedure took longer (I was there a total of 3 hours) than I expected but most of that time was spent waiting to get into the room. They had to access my port and the nurse who does that had a ferry to catch so they brought me back early and I spent better than a 1/2 hour waiting for my turn.

Once I got in there they set me up with ear plugs. A cage (not form fittng like the radiation mask) goes over your head and they stuffed additional foam padding in around the side of my face both to keep my head still and to provide additional sound deadening. And it's a good thing they did. That machine is NOISY! I've since read the decibels it puts out are similar to a jet taking off.

The biggest surprise to me was that instead of just putting my head in the machine like I expected, they slid me in up to my waist. It was a tight fit which was a little claustrophobic. They have a mirror attached to the head piece so you can look out through the foot area, and they have a good cooling breeze running through there which I found very helpful. And I had thought ahead and had taken an ativan. But it was still unpleasant. They took 5 separate scans. The first was only a minute, but the others were between 5 and 8 minutes. After the third, they pulled me out, injected some contrast solution and sent me back in. I found the best thing to do was to keep my eyes closed. There was nothing to look at anyway and looking at how close the wals of the tube have you closed in could get a little freaky if you stop to think about it too much. After a while, I could have almost drifted off, but the noise is crazy and the machine thumps and vibrates and changes tones, etc, so it keeps you on edge.

Oh well, at least that's over. I woder if they wait until May for the Cyberknife if they would do it again.

MRI today

I have a feeling that the tumor in my hip is growing again, which would mean that the chemo is not working. I have been having some discomfort on the back side of my rear end, which is the opposite side of where the groin tumor was. I guess it's possible that it is late developing radiation damage but I tend assume the worst until I hear otherwise. My CT scan isn't until April 13th so I won't hear anything about that until my follow-up on April 15th.

In the meantime, I get my first MRI this afternoon. I have noticed my eye is more swollen in the mornings lately which again could be from the radiation or could be a sign the radiation wasn't effective. At least I'll meet with the cyberknife doc next Friday for the verdict on that.

So I'm feeling less confident that treatment is working. *Sigh*