Tuesday, June 29, 2010

Bad Things Break In 3's

At least they do in my world! My poor little laptop, that I LOVE, I might add, has been on it's last leg for some time now. But, I've made due. For my birthday/Mother's Day present I got a new mini laptop. And, I hate to say it, but I hate the damn thing! Everything is just way to small for me! It's perfect when I travel, but for everyone day use, it's not so usable. So, I saved my birthday money, and have been saving my tutoring money to purchase a new laptop. Luckily, I now have enough because my laptop DIED last week. Totally died. A virus attacked it and now it won't even turn back on. Grrrr! So, a new laptop was ordered.

Then, this weekend we were out of town, we came home to a rather warm fridge. However, the freezer was working ok, so we defrosted it, cleaned the back of the fridge and prayed it would start working again. But, of course, I'm not that lucky. This morning every thing that was in the fridge was bad. Luckily, we had moved most of the food to the freezer already, but the milk was nice and chunky and the OJ was rather warm. So, I got to go purchase a new fridge today. Two huge expenses that we were not planning on needing to make. Grrr!

So, now I am just sitting back and waiting for the third to happen. Pretty certain that it will. I'm just hoping its something small like my hairdryer!

Friday, June 25, 2010

I love FAT!

I was able to get in to my dermatologist today. They were awesome and squeezed me in, in between appts. My derm went ahead and removed one of the nodules instead of performing a biopsy. He was UNABLE to find any pigmentation in the nodule. When he pulled the nodule out it was just one big FATTY mass!!  It's called a Lipoma and they will come and go. Some will be painful, some will not. It has to be a side effect of the RO5. But, I don't care, they are NOT cancer and that is what matters!

It feels so great to finally have some good news! I was so happy that I started crying right there on the surgical table! God is good! Keep praying!

Thursday, June 24, 2010

Vanderbilt appt

Some things have changed since I last posted. My appts at Vanderbilt have been changed to next Thursday. Apparently that was the soonest they could get me in. Whatever. Like I've said before, they don't work with out of state patients very well. So, mom and I will leave next Wednesday and return next Friday.

I talked to the nurse at Vandy today and she has been talking to several other nurses in the Melanoma dept. Apparently, these is a possibility that these nodules may not be melanoma. Apparently, there are several patients that have been on RO5 who have developed nodules similiar to mine and they turned out not to be cancer, but some sort of side effect from the chemo. In that case I would go to the dermatologist to get the issue figured out. We already know, that if there is a side effect to be had, I will have it!

It's a sliver of hope, but at this point, I will take it! So, keep praying people!

Tuesday, June 22, 2010

New Trial

Since I last updated, I have found a total of 8 nodules. Some have disappeared, but then another pops up. It's a never ending vicious cycle.

I seriously wish I had a dollar for every time I heard someone say "You can beat this." Because, honestly, I can't. Melanoma is not something you "beat". If you look at the statistics, only 10% survive past 5 years of diagnosis. Don't worry, I'm not giving up. Not by any means. I am just trying to make you all aware of how this awful disease works. Melanoma will come back. It will always come back. No matter what stage you catch it at, it will come back. It's just a matter of when. Mine was not caught early. Therefore, it had more time to spread to those lower layers of the skin and venture to the lymph nodes. It could have been prevented. If I had gone to the dermatolgoist earlier, all this could have been prevented. Now it may kill me. So, please, please get checked. Once a year go to your derm for a full skin check. It's worth it. Trust me! Melanoma takes around 10 years to surface. Which for me would have been in the high school years. I am paying for that beautiful tan I had each year before prom.

Ok, I am getting off my soapbox now. Point proven.

Anyway....I leave Sunday to head to Vanderbilt. They will biopsy at least one of the spots (I am hoping not all of them! Ouch!) If they come back as Melanoma I will discontinue the RO5. They would also like to do a CT scan to stage the progression, however, I am not so sure my insurance will cover that since I just had one a few weeks ago and I will have to have another before I start the next trial. So, Vandy is supposed to be checking with my insurance on that one.

I have already talked with my nurse at MD Anderson and there is currently a MEK trial that will be perfect for me. It is for patients that have already been on a Braf trial. What worries me is that it does not have as good a success rate as the RO5. And it only worked for a few months. But, what do I have to loose by trying a new drug? Nothing at this point.

If you have read, or watched the news, then you know about the "new" drug ipilimumab. It is actually an older trial, but they had to wait to publish the results in order to track survival ranges. Ipi only works on about 20% of the patients. However, it will probably be approved by the FDA by the end of the year.

So, at this time I am going to give the MEK trial a shot. MEK and BRAF trials only come along once in a while. If you can get in to them, then you go for it. My nurse at MDA did not think getting into the MEK trial down there would be a problem. I have to be off the RO5 for 10 days before I can start the MEK trial. That would make it July 9th. Since I will have to have a CT, MRI, labs, dr appt, blah, blah, blah, I will most likely wait until the following Monday to start anything. Or, since my Dr is there Thursdays, Fridays, and Mondays, they may bring me down on Th to get all that going, then see my Dr on Friday and start the trial then. Not sure at this point. We are waiting to schedule everything until we are certain that it is in fact Melanoma.

I know some of you are so sad by the news that the cancer is back. Please know, that the fight in me will never leave. Despite everything I have been through and continue to go through, I know that I am blessed. Cancer has taught me a lot. It has taught me a new appreciation for life, for my family, and for my friends. I take nothing for granted. But, boy does it piss me off when people do :)

Sunday, June 13, 2010

More...

So, I am constantly finding new lumps. These are different from any that I have discovered before. However, I am fairly certain they are melanoma. So, in theory this damn drug worked less than 2 months on me. I am pissed. I am angry. I am sad. I am scared.

But, I do have a plan. Which if you know me, you are not surprised to hear this. When the RO5 was working wonders on me, I was only taking it. No supplements, at all. I was then taken off the RO5 for a week and a half, then when I was restarted on it, it was at a lower dose, but I was also allowed to take my supplements. I have always wondered if the supplements were affecting the effectiveness. I have decided to stop all of my supplements, including the IVs of Vitamin C, for now. I have already emailed my nurse at MDA to give me a call. I am hoping to make an appt at MDA for the end of next week. If the RO5 begins working, then I will know that the supplements are affecting the uptake of the RO5. If new spots continue to pop up, then I will keep the appt at MDA and see what my oncologist there recommonds. If the spots begin shrinking, then I can cancel my appt at MDA and just discontinue the supplements.

I don't know what to expect. I really thought this would work longer. I really did. I am in complete shock that this is happening. The hard part about trial drugs is you just don't know what will make it work or how long it will work. Hopefully my nurse at MDA has some helpful suggestions.

Please continue to pray for me, and for my family. It hurts so bad, knowing that my kids may be forced to grow up without their mother. It's not fair. Not fair at all. Something has to work on this. Right?

Monday, June 7, 2010

Appt Today

Today I had an appt at Vanderbilt. At this appt I had I had fasting labs, CT scan of the abdomon, chest, and pelvis and of the lower extremities, EKG, appt with my oncologist, and post RO5 labs.

The labs looked great. WBC, RBC, platelets, etc, are low, but not lower than last time.

The oncologist made a special point of having the radiologist read the CT scans before my Dr appt. I am so grateful that he understands how patients feel. The urgency you feel before an appt is crazy. I truly do like my Dr here at Vanderbilt. But, the care at Vanderbilt is nothing compared to MDA!

Anyway, the chest, abdomen, pelvis ct showed no new growth and MAJOR shrinkage of the former tumors!! WOOT WOOT! The tumor in my groin has shrank from 2.4cm to 8 mm (rough estimate). The tumor is my left hip has shrank from 1.5cm to 5mm (again rough estimate).

The lower extremities CT scan was not in at the time of my appt (GRRRR!) This is very frustrating because last Saturday I noticed a spot on the back of my left calf. It is under the skin, but it is long (about 8 mm) and hard. You can't see it, but you can feel it.  I showed it to the Dr and he agreed that it is worrisome, but here is the dilema...

If we biopsy it and it comes back as melanoma I am OUT of the trial. We know that this medication is working. There is no reason that the cancer would be spreading since the other two tumors have shrunk so greatly. So for now, we are going to sit and wait. If it grows, I will return to Vanderbilt and a new plan will be put in place. But, for now, I am happy with waiting. A few weeks ago I had two of these lumps, one in each hip. A few days later they were gone. I don't know what they are, but it certainly is rather odd.

So, for now the plan is to stay on 720 mg (apparently I can't increase the dosage once I have gone down on it. Grrr for trial protocal!) and return to Vandy July 6th for labs and Dr appt.

Thank you all for your prayers. They are working!!

Saturday, June 5, 2010

Doing Well..

I just wanted to update and let you all know that I am actually doing quite well. The joint pain comes and goes, but no fevers, no rash, no headaches. Nothing, you know, other than the darn joint pain! But, it is getting better. I have also discovered that my skin is SUPER sun sensitive. I wore 100 SPF to the zoo the other day, plus put it on 3 times while I was there and I FRIED! You can tell the spots I missed or only hit once or twice. It hurt a little bit, but the worse part, is it looks really gross! And I tend to wear tank tops. A lot!  Oh well. I did purchase a shirt sleeve UV shirt to wear the next time we take a zoo trip. Hopefully that will help!

On another note, my wonderful friend Amy designed an awesome float (for the parade that was in our town) to promote the website that she set up for me for donations, shirt orders, and info on the benefit that my friends are hosting to raise money for my family and me. Please be sure to check it out and let us know what you think! I will try to get post pictures posted soon of the float. You can also check them out on FB. She did a fab job!

I can't even begin to tell you how grateful I am to have such wonderful friends and family. People who are willing to donate their time and energy (not to mention money) to put together a benefit so time consuming and awesome warms my heart and makes me realize how very loved we are. So, thank you to everyone who has donated money, food, time, effort, and energy. And also thank you to everyone who has purchased a shirt. It is SO awesome to see people wearing the shirts around town! That kind of support brings tears to my eyes. I am blessed. Beyond measure.