Thursday, May 26, 2011

Round Two

 This is one of several MD Anderson hospital buildings. They are connected by skywalks and it is completely amazing here. The staff is incredible to work with and everything seems to run smoothly which is amazing for such a large place.

We had Cleve's second consult today with Dr. Wen-Jen Hwu. She has a laundry list of credits and qualifications and has an abundant knowledge of not only the field but of past and present studies on melanoma. She has conducted her own studies as well as having over 45 published articles on the subject. This appointment gave us completely different information and recommendations than our last one. Dr. Hwu's main concern is if Cleve's melanoma has a positive BRAF gene mutation. If it is, then he can be a part of a study that involves medications that destroy the cells containing the BRAF gene, therefor destroying the tumor. There is also no placebo group in this study. It doesn't matter which stage Cleve is in to receive this treatment. If he is BRAF negative then her suggested treatment is interferon, interleukin-2 and chemotherapy together. It is a very aggressive approach but as we know melanoma is a very aggressive cancer. It also helps that Cleve is young and in otherwise perfect health. There is a very strict monthly followup schedule to monitor the tumor, perform scans and blood tests and assess his general health and response to the medications. Please keep in mind that this is a very condensed version of todays appointment.

Over all we left this appointment feeling a little bit more optimistic than in Portland. Yes, it would be a lot of traveling. But what is most important is that we felt that Dr. Hwu is current on studies, the field, and up and coming medications. She has her finger on the pulse of melanoma studies, at the forefront, conducting her own clinical trials and applying her own ideas at a top rated cancer hospital. While the fact that Cleve will most likely be dealing with this disease for a very long time, I think the difference between the two appointments is that here in Houston there were a bit more choices for therapy at different stages or circumstances that are maybe more cutting edge.

So now we are just waiting on the results of the BRAF testing being done at OHSU. Once that is done we can hopefully get the ball rolling on a treatment for Cleve for whichever option we decide.

Wednesday, May 25, 2011

One down, one to go

What a long day today.  We just got home from Portland and re-packed for Houston. We had our first consult appointment today with Dr. Curti at the Providence cancer clinic in Portland. This is Cleve in front of the hospital before todays appointment.

Todays appointment was very informative, we got a lot of questions answered. First and foremost, the Doctor thinks we need to get the tumor out, which we are all for! Second, Dr. Curti has staged Cleve at a stage III cancer. It is his belief that the location on the sacrum does not coincide with the characteristics of a metastasis of melanoma; its an abnormal place for it to show up. Great news! However, we will closely monitor the area and if there are any changes we will have another biopsy performed. Dr. Curti did say it is not out of the questions though, he gave it a 1 in 1500 chance that it is metastatic, we'll take those odds.

He then went over possible treatment plans for stage III and IV. For stage III it is the doctors opinion that an interferon treatment would not be very beneficial to Cleve which is the standard of treatment at this time. Interferon, he said, works great on women with unpalpable lymph nodes...the complete opposite of Cleve. He is conducting a study though using a vaccine. The study breaks the participants into two groups. 2/3 of the group get the vaccine, 1/3 gets a placebo injection. This is after the resection of the tumor is performed and he is healed from the surgery. If he does happen to be in the placebo group and there is a change for the worse in his cancer, he would be pulled from the study and treated accordingly. I should note that the study is nearly completed and they are only taking about a hundred more patients. This is a good sign because if the trial was unsafe, the plug would have already been pulled.
If we end up looking at a stage IV, treatment would be shots of interleukin-2 or IL-2. Cleve's sample of the tumor is being tested for a BRAF gene. If it is present then a vaccine could be made into a possible treatment. This, however, would only keep the cancer away for only a few months at best.

Dr. Curti made it very clear to us that in Cleve's case a cure is a long shot and that what the treatments would be doing is holding off the cancer for as long as we can until it returns and then we deal with it all over again. He said it was a matter of quality of life instead of a cure. I think we kind of new that. Melanoma is an elusive yet very aggressive cancer, we just need to treat it accordingly. And so tomorrow...actually this morning, we are taking off for Houston to get a second opinion and see if there are any other options available for Cleve. Keep your fingers crossed.

A special thank you to Yaser for coming along, taking notes and asking wonderfully insightful questions that will aid us in making the best decision for Cleve. And to Jennifer and Angie for taking care of the little monsters during our appointment. They had a ball with you guys and didn't want to leave, Gavin was actually mad at us for taking him away. And to Steve and Tina for opening their home to us for the weekend, we had a wonderful time and made some nice memories as well.

Ok, im about pooped out so it is bed time for me. I will keep everyone posted on Thursdays visit. Goodnight.

Friday, May 20, 2011

This is Cleve on Tuesday, the day of his biopsy. The results came back as normal bone marrow. This leaves us wondering what to do now. We were expecting to find something abnormal since the PET scan showed a "hot spot" of cell activity. Currently we are checking with Dr. Palmer to see just how confident he is about whether he was in the correct spot or not. The pathologist is giving us a sliver of hope that Dr. Palmer was indeed in the correct area and that this area, however rapidly cells are producing, is benign. So, in the spirit of keeping a positive attitude, Cleve and I are choosing to believe that Cleve is a stage III cancer until told otherwise.
I would like to also take this opportunity to thank my friends/co-workers, they have been amazingly wonderful, supportive and understanding. The treats were wonderful last week and are almost all gone. Nicole, Cleve had four cookies last night and so far, no side effects. Great job! *wink, wink*  I really cant thank you all enough.
So, where do we go from here? We are going to Portland today. We are taking an extended weekend vacation with the boys. We are spending some good, quality family time with the boys just in case Cleve is not feeling well enough this summer to either go on our vacation in August or take any mini vacations to the coast or something. He wants the boys to have some good memories through all of this. We will be seeing my sister in Portland, which I cannot wait, I miss them so much. And we will be coming home on Tuesday after Cleve's appointment. Wednesday morning Cleve and I will be heading to Houston, Tx for another consultation with MD Anderson, the top cancer clinic in the country. We see them on Thursday, Cleve's birthday so we are hoping for some happy birthday news. Cleve's former employer will be attending both consultations with us and we could not be more thankful to have another friend and professional set of ears to help us in our decision making. Thank you so much! But now it is time to pack so we can get moving on our mini vacation. I will be traveling with laptop in tow in order to keep you all updated. Here's to life...

Tuesday, May 17, 2011

Biopsy day

 Cleve went in for his biopsy today. What an incredibly exhausting day of just sitting around. We checked into the hospital at 11:00. Cleve was finally taken back for his procedure a little before 2 o'clock and returned to the room a little after 3 o'clock, finally leaving the hospital at around 4:30. Dr. Palmer, who is an interventional radiologist stuck a rather large needle through the bone of Cleve's sacrum. This required a little tapping with a hammer....bleh! Cleve was on medication so he was awake through the procedure but little memory of it. He is recovering in bed next to me as I speak. He is a little sore but doing well. And now, more waiting. We should hear from the pathologist in a day or two with the results and the stage of his disease.  We also made an appointment up in Portland with a Dr. Curti to discuss possible clinical trials we may be able to participate in or what types of treatment they can offer Cleve. We are also looking into having a consultation with the MD Anderson cancer center in Houston, Texas. It is one of the leading melanoma research centers in the U.S. Busy times ahead of us. I will keep everyone posted, in the mean time, keep your fingers crossed that the cancer did not metastasize into the sacrum. Lets just hope that the lesion is from an unknown trauma or something simple like that.

Saturday, May 14, 2011

Still trying to stage

I've been trying to put this post off for a while now. We still have some questions left to answer. Cleve had his PET scan on wednesday, and unlike most people, we are able to look at the scans even before the radiologist has had a chance to dictate the findings. So, of course we looked on wednesday night. We saw the tumor under his arm which we expected to see, but we also saw a spot light up on his sacrum that we did not expect to see. Cleve had another MRI of the sacrum done on Friday morning in time for our appointment with the oncologist in the afternoon. It showed a small spot off to the left of his spinal column.

During his appointment with the oncologist it was unanimously decided that we need to see just what this "spot" is. It could be a metastasis of the melanoma, or it could be some other pathology...we're hoping for the latter. So before we can remove the tumor we need to know if it truly is a metastasis. Cleve will be having a biopsy early next week. It is from this point that it gets confusing and complicated.

If it is not a metastasis Cleve will be classified as a stage three. We can remove the tumor and continue with therapy for the next year. If it is a metastasis we cannot remove the tumor. In either case Cleve's oncologist wants him to be part of the up and coming trial studies up in Portland, so we will be making several trips up north. If it is a stage IV cancer we need to keep the tumor inside of him to see if the trial medications are working to shrink the tumor and the one in the sacrum would be too small to monitor.

It's not exactly the news we were hoping for but we at least have something to go on; we have a plan to pursue. Cleve and I are trying our hardest to stay positive and to not think about the statistics. The truth is, the statistics aren't great, but if he is lucky enough to respond to any of the treatments, as his oncologist put it, "it's a home run". So lets keep our fingers crossed for a homerun

Wednesday, May 11, 2011

Tests, tests, tests...

Today marks the end of the tests for Cleve. Cleve had a CT scan last friday which showed no metastasis to any of the main organs. This is also the scan that gave us an idea of just how big the tumor might be. He had an MRI on monday of his noggin. Cleve was thrilled to see he had a brain! (his words, not mine) and that there was no metastasis there either. Today was his PET scan. In order to do this scan, Cleve was injected with a radioactive dye. This is a whole body scan that will show, thanks to the dye, any area that has rapidly dividing cells. We expect to see the tumor under his arm, we are hoping to see no other spots lit up. This would most likely give us our best case scenario of a stage three cancer. However, we will not know the full staging until the tumor is removed, so lets not get ahead of ourselves. The downside of the test today is that Cleve is radioactive man for the next 24 hours. This unfortunately means that he can have absolutely no contact with the boys for 6 hours and limited contact for 24. Thanks to Pat and Susie for looking after our yeti with a glowing personality this evening. While he was with them, me and the boys went to karate class for walker and ate at Mazatlan Grill for some quesadillas. I had to tell them that daddy was working late so he couldn't join us. We're going to have to tell the boys at some point, which will be difficult since Walker will be able to understand what is going on, unlike last time when he was 2. We see the oncologist at the end of the week to see where we go from here.

Thank you to all who have sent prayers, positive energy and well wishes. We are so thankful to have friends and family who care so deeply. We love and appreciate you all. In the words of Roger Clyne...heres to life

Sunday, May 8, 2011

This is who we're here for...

Welcome to the Yeti Project. I am creating this blog to support the father of my children and my husband, Cleve.  Early 2007,  Cleve had a malignant melanoma on the back of his right shoulder. Shortly after being diagnosed, it was removed along with a lymph node. He has been in remission for the last four years. Unfortunately the cancer has returned, and although it is still very early in the diagnostic process, we are 99% sure it is a recurrent melanoma. Cleve has found a lump under his right axilla (armpit). Last week he had a CT scan that showed that the mass is approximately 5x7cm. Cleve will be having an MRI and a PET scan this next week so we can stage the cancer and develop a plan of action. We are hoping for a stage III cancer, however, even with a stage III we are in for a long bumpy road this coming year. Prayers, good energy, and loving thoughts are welcomed and encouraged. In return I will keep the posts coming and maybe include a few more pics with permission from cleve.