Getting Aggressive

After the PET scan in March, we knew that we needed to get with our team in Tulsa, at Camelot Cancer Care, and come up with a new, tweaked, treatment plan. As I stated in our last post..we were not as aggressive as we could have been, cutting corners due to financial resources. A dear, dear lady, that goes to church with Derek's Granny, had given us enough money to cover our hotel expenses for the duration of our three week stay, this past November. She once again offered her help financially. We thank God for her!!

The week before Easter, Derek headed up to Tulsa, by himself, in order to save on hotel expenses. He left early Wednesday morning and returned late Friday night. He stayed with our favorite nurse and her family the two nights there. He had, I believe, three different types of treatment those three days...nothing that would make him feel ill. He returned home with another 20 day supply of the drip treatments with DMSO, and some oral supplements, etc. The new plan: an oral supplement two to three times a day, DMSO drips once a day, a leg rub solution twice a day...etc. Also included, no more spreading the four day bags out over seven days! So, we began immediately!!

The reactions/results thus far: very mild nausea..nothing he cannot tolerate or bear; swelling of the tumor (see last post about tumor death causing edema ~ YEEHAW!); extreme headache...which lasted a few days, but has since subsided (Thank God and thank goodness our favorite nurse Belinda doesn't mind (or at least puts up a good front) answering her phone at night!). What does all this mean? Derek was experiencing what is referred to as "Herksing" or the "Herksheimer's reaction". When toxins are released in the system, it causes flu-like symptoms....in other words...a GREAT SIGN!! These symptoms tell us that all the treatments are working! Even though it is very hard to watch, a little part of me rejoices!! I hate that Derek has to go through all of this, but I am so grateful that we are winning. We have been told by several patients who had chemo prior to going to Camelot, that their worst day on these treatments were nothing in comparison to their best days on chemo!!

Latest PET Scan Results

Derek had a PET Scan on Wednesday, March 10th. A few days before the Pet Scan, I spoke with our friend, Janet Poston, from Tennessee. We met her, along with her husband, Stan, at CCC (Camelot Cancer Care) this past November while Stan and Derek were both being treated. Janet had told me to call ahead and ask if we could speak with the doctor who reads the scans, Dr. Chacko. I am grateful to God that we did, as he was very informative and thorough. It is not within Dr. Chacko's job description to meet with the patients. He usually just reads the scans and faxes his reports to the ordering doctor, however, he took time to sit down and explain in great detail all that was going on in Derek's body. We feel very blessed to have had the opportunity to meet with him and look at not only this scan, but November's as well. We were able to compare the scans, side by side, and see the changes in the tumor. Knowing the results and having answers within hours rather than waiting days for a phone call was a HUGE relief. There are no words to describe the anxiety days and hours leading up to these scans and in the wait for the results!!! It was wonderful to leave Oklahoma City with answers!! Also, these Pet Scans are very accurate at reading what is going on in Derek's body and with the cancer. A comfort to Derek is that this PET Scan uses a fourth of the radiation of Pet/Cat scans!! The trip to Oklahoma City is well worth it!! That plus, after meeting with Dr. Chacko, we completely understand why Maureen (director/owner/operator of CCC) uses and trusts only him. We were told he is one of the best at what he does...and we believe it!

The Results~
Dr. Chacko showed us the scans and explained that while the tumor appears bigger, it is less metabolically active. The SUV values are down from November's values of 8.8 to Wednesdays values ranging from 7.9 to 8.3 at the hottest - meaning the cells are less aggressive. Even though, the numbers are down only slightly, they are still DOWN..progress is progress! He also explained that when it comes to cancer you cannot look at size.. many aggressive tumors outgrow their blood supply, and will appear to be shrinking, just before taking off and spreading. In other words, shrinking does not equal curing...hmmm, imagine that. Also, cell death can cause edema (swelling) and it could very well be just that. He explained that with sarcomas, (Derek's in particular), they are extremely aggressive and usually spread "like wildfire". He told us with most that he has seen (and he's seen many) that is usually the case. With chemo, they can build up a resistance and become more aggressive. He showed us all the of places that liposarcomas usually spread (the liver, lungs, spine, and behind the stomach), all of which are clean...NO METASTASIS!! Not even in the lymph nodes near the tumor.. it is all contained locally!! According to Dr. Chacko, what we are doing is not necessarily 'curing' the cancer, but it is definitely holding it at bay. Now...we had been off the treatments for three to four weeks prior to the scan; and because of financial reasons, we had been spreading the usual, four day bags out over seven days. I feel that we can definitely get more aggressive. We know that what we have is aggressive so we need to become more so! We can't give it a moment... With all that being said, we will be returning to CCC, in order to get with our team and come up with a new game plan. Once we have done that, we will update again.
Thanks for reading and especially for the prayers!
Misty

Update from Derek

I wanted to comment on my journey with cancer (liposarcoma), and my current treatment through Camelot Cancer Care in Tulsa, Ok. For those of you new to this blog, I was diagnosed with Myxoid Liposarcoma with a tumor in my left posterior thigh in October of 2008. Sarcomas are 1% of adult cancers and liposarcomas are 1% of that. A local surgeon tried to take all of the tumor out, but...it came back, of course. Needless to say, I started out my journey with cancer with a lot of fear and confusion. I went to CTCA in Tulsa, OK only to be told this by a doctor: "I don't see these types of cancer, this is rare, I don't know how to treat you, I am concerned for your life, I don't know what the next step is, you need to be at either Sloan-Kettering or MD Anderson!" At least he was honest. So, I went to Houston. MD Anderson was like a cancer holocaust. I felt like a number, not a person. I have never seen so many pale, scarred, hairless, and scared people in my life. My wife kept bursting into tears. I took their scans, waited patiently for the results and their coveted medical opinion, and decided never to return. I respect most doctors, but this time, I felt they did not have the answer for me. I decided, much to my wife (at first) and family's dismay, to go alternative to "cure" my condition.

After countless hours of research, I realized that I had a "terrain" problem. I had to make my body a hostile environment to cancer. I have embraced many alternative protocols, but more specifically the Bill Henderson Protocol and those on cancertutor.com . I also embrace and agree with Todd Bolinger's book, "Cancer: Step Outside the Box". Through these, (along with many other protocols, faith in God, and trust in my body's ability) I overcame my fear of cancer. It has now been over a year since my diagnosis. I recently was urged by family to consider getting treatment at a clinic so as to not get backed into a corner with the cancer. My mom said, "If I were to sell stock and pay for it...would you go somewhere to get help?" I told her there was only one place that I would consider in the states, and all of my research pointed to Camelot Cancer Care in Tulsa, Ok. The science behind the DMSO made sense to me. I also was also interested in the work of Dr. Coley and the induced fever therapy for cancer, specifically Sarcomas, as mentioned in the Ralph Moss reports.

Camelot Cancer Care

I started treatments at Camelot with the DMSO and other ingredients on Nov 2-21, 2009. I had a recent PET scan on the 23rd and the results showed a large 8 cm tumor in my thigh, with outer 8.8 SUV value,...BUT, with a necrotic center!! The center of the tumor is dying...clinic director Maureen said, "We have it on the run!, We can't stop now, we can beat this!" I also have NO distal metastatic disease!! I am encouraged by the results.I am continuing with take- home treatments. The people at CAMELOT are phenomenal. They are passionate about what they do. Queen Maureen- she is feisty and not afraid to call it like it is. She comes across awkward at first, but then, you see the Einstein-like genius emerge when she starts talking cancer! When I think of Maureen, I think of Emily Dickinson's poem, "Much Madness is Divinest Sense" Within 5 minutes of being there, I knew I was in the right place. They talked my language. Lady Belinda, the vascular nurse (she loves what she does,she said I had a "beautiful" vein) I have never met anyone more skilled, more passionate, more caring or determined person to have at my side. Sir Noel -a true nobleman, gentleman, and friend. It was Noel that gave me analogies and pep-talks, that encouraged me to stand strong. Just ask for his speech on the primary immune system and the Spartans!! There was also John, the clinic manager/guitar prodigy, and... Meticulous Michael, the IV tech. Oh, and not to forget, Noel's dog...the Camelot mascot...CHAMP the doberman! I count myself blessed to have met these individuals. They continue, as I write, to monitor my progress, coach, and encourage me in my fight against this. I feel like the captain in the Apollo 13 movie, I am out there in space with dangerous odds, but I am not alone...and I know that even if all I have on board is duct tape and few canisters...Maureen,Belinda, Noel, John, and Micheal will not stop until they see me back home safely!

Update: I have a few more iv bags to finish and then I will be scheduled for another PET scan soon in February. I feel great. Still believing that the tumor is dying or necrotic and will eventually dissolve or may be able to be removed safely with surgery. Please continue to pray for me. I covet your intercessions on my behalf. My utmost thanks to those who have given to us financially. Your kindness is overwhelming.

Derek

Slowly, But Surely Beating Cancer Butt!

Hi Dear Ones!
I felt it was time to give a quick update. God is more than good to us. Things are going well...we are continuing the treatments that we began in November at Camelot Cancer Care in Tulsa. I administer the daily drip treatments through his Picc line, and I change his dressing every seven days. If you know me at all, you know that I have an extreme fear of needles (a phobia I've had since childhood)! I hate needles, syringes, IV's, and I become very weak, even to the point of passing out (a time or two) at the sight of blood!! So...most of these things are COMPLETELY out of my COMFORT ZONE! However, I can tell you (TESTIFY!), that God has given me a supernatural strength to get through this time. I can also, honestly say, that I absolutely love taking care of Derek in this way. I count it an absolute joy to walk this path with him and to feel like I have a part in his healing! We have become such a great team over this past year. Derek continues with the supplements, juicing, diet, and enemas. I help him with the juicing, supplements and meals, where I can. We are blessed that Camelot staff has come up with a wonderful plan for kicking cancer booty and long term health for Derek. A plan that hasn't completely taken over our lives. Derek continues to work and feel great! The treatments do require time, effort and energy..but are not a hassle at all and I know things could be so much worse! I feel such thankfulness, to God, for the path in which He has so obviously led us!! I can so clearly see God's hand in every step that we have taken over this past year and three months and His provision throughout is nothing short of overwhelming!! Just as we run out of a treatment bag, God's unexpected provision shows up, yet again...in the most amazing ways!! The director, Maureen, and staff at Camelot are amazingly generous (outright GIVING on more than one occasion) and will literally work every angle to provide us with the treatments needed to finish this fight. They absolutely have gone above and beyond for us. Even to the point of offering to drive the three hours from Tulsa to us, here in Texas, when our transmission went out on the van. That is right! John, from the clinic, offered to make the six hour, round trip to bring us the supplies and treatment bags! Instead, our buddy, Troy, who lives up near Tulsa and is working in our area, delivered the bags! Thanks Troy ! The financial help from friends and family is amazing every time..in that God's timing is perfect!! It never fails (His love never does!) that a need arises and the EXACT amount comes in the mail from an uncle or cousin. So many have blessed us! Thanks for being God's hands! We have another PET Scan in February, to see how much more of the tumor is dead (I hope the whole thing will be dead!), so please keep us in your prayers!
God bless!
~Misty

Welcome 2010!!

Wow! What a difference a year makes!! This time last year, we were months into 'the diagnosis', without a plan, and unsure of what our next steps should be. We had been to Cancer Treatment Centers of America (in November), only to be turned away, then sent to M.D. Anderson (in December), and we were waiting on their 'treatment plan'...I was feeling anxious, scared, and quite honestly, as the New Year was being celebrated, I wondered how many New Year's Derek and I would face together.. BUT that was THEN!! This is NOW...as we celebrated this New Year, I felt so full of HOPE!! I felt tremendous peace. I realized that I lost something in 2009 that won't be joining me in 2010...FEAR! I am so hopeful that this is the year that we will see cancer eliminated from Derek's body!! Keep praying, we are very excited to see what the February PET Scan reveals!!
~This is going to be a great year!!
May 2010 bring nothing but blessing your way!!
Misty

PET Scan Results

We got the phone call from Maureen Long, the director of Camelot Cancer Care, at about 6:40pm this evening. Now..this was just a phone conversation, I have not seen the PET Scan pictures myself...and I was listening in on the conversation with my head up against Derek's head, while his ear was to his cell phone...and I do not know or understand all that there is to know, more will be explained when Derek and I travel back to Tulsa next week.

Good News!~
1. The cancer has not metastasized into Derek's torso or anywhere else.
2. The center of the cancerous tumor is DEAD!!

What this all means and then the slightly negative part...
The cancer has not spread...self explanatory. Tumors die from the center or inside-out...so we know what we have been doing IS WORKING!! With PET Scans they measure SUV's (?? I think that is the correct term) and anything with a value of five or above is considered cancerous. The center of the tumor is dead..the cells surrounding the center measured an 8.8 (I believe). Also (here is the slightly negative part) there was an upward streamline towards a lymph node that measured a three point something and then (and I apologize to family that when I spoke with you I did not know this part, this is the part I missed and Derek had to explain to me later.) there is a place near the lymph node that measures 4.1. Now, again...anything 5 or above is considered cancerous, so these numbers are low enough that they are not even considered cancerous...we will keep plugging away and they will not have the opportunity to become cancer!! Maureen said that as cancer is dying it can try to recolonize and move else where...and she believes that is what is happening...or it could be that before we got to Camelot, that the cancer was trying to move. Whatever the case...what we are doing is working and we cannot stop!! We just got to keep hammering away. Maureen said, "We can beat this! We know that what we are doing is working." Because the cancer is trying to move, we may have to tweak things in our game plan slightly...BUT PRAISE GOD!! It has not metastasized and IT IS DYING!!! I cannot tell you how I love to hear it and I love to say it...the center of the cancer is DEAD... PRAISE GOD!! THANKS for all the prayers... we will beat this! God is good.

Special Thanks to Kirsten and Her AMAZING Friends!!

I wanted to say a special thank you to Kirsten. I have no idea what the email said that she sent out to her friends and then they passed along to their friends, but I have never been treated so warmly by complete strangers. We met Kirsten and Joe, her husband, about 12 years ago at Victory Life Church in Durant, OK. They were a fun, friendly couple. We were expecting ..her first child and my second at the same time..in fact our babies were due on the same day! (We didn't have them on the same day.) Anyway, they moved and we moved, we lost contact with one another, and then later reconnected through Facebook. Kirsten kept up through the internet with what we were going through, and told me that she knew many people in the Tulsa area. Before we left for Tulsa, we started receiving cards of encouragement with money from complete strangers!! Once we got to Tulsa, we had more meals than I can count from ...again, complete strangers!! Homemade meals...delicious home baked goods!! We also had...babysitters, hand me down clothes, and offers to take our kids to movies, pizza, etc. It was AMAZING!! This is the body of Christ! This is how the church should operate. I will NEVER forget this time in my life and I most assuredly will never forget the love of God shown to us through strangers!!! God bless you all!!