Test Results

Hey friends,

This really isn't a post I want to be making, and I would gladly put it off. But I know so many of you love Cleve and want to know whats happening, so, here goes.

Cleve had his PET scan on Wednesday and his brain MRI on Tuesday. His PET scan showed that he has a somewhat large tumor growing around his right shoulder and under his scapula. He knew something was going on in this region because, though he is mostly numb here from the last surgery, he felt some pain towards his back and under his scapula, we just didn't know it would be so big. His sacral tumor has grown larger as well and is also painful for Cleve. These two aches makes it difficult for him to get comfortable to sleep. There was also a new area that "lit up" on the PET in his upper left thigh in between the muscle tissue but not in the bone. There is also a lesion that showed up in his upper left lobe of his lung. And last but not least, there are two small lesions in his brain.

The amount and severity of the new tumors has really dampened our spirits, so as always, we are taking it one day at a time, one step at a time. And as always, we are so lucky to have an arsenal of people who care for Cleve enough to help us with each step. Immediately, Dr. Poisson and Dr. Traul (his boss) were on the phone to Dr. Hwu at M.D Anderson. It is her recommendation that we take care of the brain lesions first with radiation. She suggested getting the gamma knife procedure done. This is a procedure where a contraption is screwed into his head in order to line up the radiation beams perfectly. Sounds barbaric right? apparently it is only mildly uncomfortable and is a day procedure. This can be done in either Eugene or Portland. However, we have another option open to us thanks to Dr. Bobek who is a neurosurgeon here in the valley, and also one of Cleve's band mates. He has a friend at Stanford who performs this same procedure minus the screws to the head. It was invented there at Stanford and has seen great results. So currently we are waiting to hear back for an appointment time. After we get the radiation to the head, hopefully we will be heading back down to Houston for systemic treatment. This latter part is still a little fuzzy so this is all a tentative plan, you know how things change.

I do have some pictures of some of his scans. Some of the ones of the brain have arrows pointing or something measuring, other than that, I cant help with explaining it further. The PET scan is just one image of the whole series but shows you the general area of the tumors. It is the black and white image. The dark spots are the areas of tumor with the exception of the brain (in this picture you cant see the lesions, thats why we had a MRI done) the heart and the bladder. The kidney's look a bit grey and thats ok. You will see the shoulder lesion which is black, the sacrum which is black and grey and just above the bladder, the leg lesion looks like a pin point black dot, as does the lung lesion on the side, same side as the heart.

Next scans

Hey folks, I'm back. Not much has been happening since my last post about a month and a half ago. Cleve will be going in for his next scans (done every sixty days) next week. He has had his blood drawn and then will see Dr. poisson the first week of January to discuss the recent tests. In the mean time Cleve has been feeling very "gouty" or arthritic in his joints. They get hot and swollen and makes it hard to move sometimes. Then after a week or so it moves to a different joint with several being affected at the same time, and Cleve is still continuing to work. I will let everyone know how the scans go once we have viewed them. Merry Christmas, happy holidays to all and hopefully a wonderful new year.

I'm back

Boy have I been gone for a while. So sorry about that. Since my last post Cleve had a staph infection of the fluid collecting under his arm. He had about three weeks of fevers with the last week of fevers being very high, around 105. We got to spend some time in the E.R. draining the fluid and having it analyzed, and then spending time in the oncology office receiving fluids and antibiotics. That was a very hard weekend. Once we figured out what was infected in him, Dr. Traul put in a new drain which is now gone. I took pictures while in the E.R. but not of the drain being put back in. I have a weak stomach and it was a little more than I could handle, taking pictures. I was lucky to remain on my feet while watching. Plus I didn't want to get in the way of the proceedure. It was pretty cool though.

Cleve has since had a PET scan and it shows where the tumor was removed and is now healing and it still shows the sacral lesion since his radiation treatments. No new spots have cropped up, so we are lucky there. It has been six months since Cleve's diagnosis. What a wild ride it has been. I am including some of the pics that I took in the E.R. And I will try to be better about posting any changes that occur.

Cleve waiting in the E.R. feverish but freezing. Thank goodness for warm blankies

Dr. Traul with Cleve. He looks like he's in pain but he's not

Dr. Traul using ultrasound to find the pocket of fluid, getting ready to tap it

Aspirating the wound

Sorry, kind of blurry. First sample, but we needed a larger syringe

His owie leaking blood after first tap

The big gun

We got nearly 200 cc's of fluid

How is he doing?

Thank you to everyone who has asked 'how is Cleve doing'. I have been a little busy and have neglected the updates, sorry about that. So, how is Cleve doing. I think the best way to answer that is to say that Cleve is actually feeling like a cancer patient now. For a long time, Cleve had this beast inside him but felt none of the side effects of his illness, i'm sorry to say that has changed now. We don't exactly know what the side effects are from though. We spoke with his oncologist here in Medford last week, Dr. Poisson...such a great man and great person to have in Cleve's corner through all of this. He said that everything Cleve is feeling is somewhat normal or a variation of normal. This drug is still very new and we are still figuring out its side effects. Cleve's symptoms in the last few weeks have been a low grade fever off and on, increased g.i. upset, loss of appetite and he is awfully tired all the time.

The reason we don't know what the side effects are from is because we've had about three different things going on. Cleve is still on his medication, he has one more dose of radiation next week, and he finally got his drainage tube taken out about a week ago. With his medication, side effects can show up the longer he is on it. The radiation could be causing some of the g.i. upset and malaise. But Cleve also had a bit of an infection at his incision and drain site that required antibiotics. He also has some swelling going on since the drain came out so we will have to continue to monitor that.

I hope this helps answer any questions you have had about Cleve. We are in somewhat of a holding pattern, taking his meds, finishing radiation and trying to get him to rest as much as possible (which if you know Cleve that is the trickiest one). At the end of the month he will have another PET scan, but we will not know the effects that the radiation has had on his sacrum for a few months. And what is a blog post without a picture. This picture was taken the day his drainage tube was taken out.

Yucky pics of cleve's wound. If you get queasy you may want to skip this post

I've been taking some pictures of Cleve's wound that are pretty gross but I did want to document it. I thought I would share a few with you but if you get grossed out easily then you may not want to go any further. I will start with some nice ones just to ease you into them, they are a bit graphic. The first ones are of Cleve in a wheel chair because, well, when are we ever going to see that again, lets be honest. They made him leave the hospital that way. The following ones are of him "stripping" his tube or as i like to call it, draining his main vein...hehehe. I know its second grade humor but it is pretty funny.

Cleve being discharged

Really, you're gonna take my picture now?

Cleve's incision and indentation under his arm pit

Incision and drain

gross huh? 

Stripping of the tube

Stripping creates a vacuum in the wound 

We have to measure each time

Wanna drink?

Part of the end product, with some solid matter in there too!

Surgery day

Well, I'm sure that most of you know already that Cleve got through the surgery just fine today. I'm pretty sure the grape vine in the rogue valley is pretty extensive. Dr. Ross said that the tumor was very large and made up of several different nodes that were all matted together. Dr. Ross took the entire chain of lymph nodes leaving nothing behind including a nerve that the tumor had wrapped itself around. He did not feel comfortable cutting through the tumor itself to save the nerve and Cleve should have no major side effects from removing that nerve branch. Other than that it was a very boring day of waiting around. Cleve got out of surgery at about 1:00 pm here in Texas but finally got moved to a room when one became available at about 7:00 pm. I am including some pictures including Cleve working up until they took him away and Cleve after surgery in recovery with his drain.

Pre-op day

Today was our pre-op day consisting of three appointments. Our first appointment was with Dr. Ross the surgeon who will be removing Cleve's tumor tomorrow morning. His treatment plan is to remove the entire area of lymph nodes under his right arm. His term was "curative intent"... to remove all possible nodes so that the melanoma cannot return to that area. The tumor will then be immediately taken to the lab and harvested to create T-cell lymphocytes. This is where lymphocytes are made to combat against the tumor. They harvest millions of them and then freeze them for future use. When we do end up using the T-cells, as I understand, Cleve's current white blood cells will be removed and replaced with the new T-cells via infusion. This will be an option when everything else fails. It is a huge procedure equivalent to a bone marrow transplant and would require a lengthy stay in the hospital, this is why it is our last resort, at least we have one. Dr. Ross seemed to be a very nice man, very sure of himself and of his work saying he's done thousands of these procedures. The procedure itself will take about three hours, and Cleve will only need to stay in the hospital for one day. He will have a drain from his wound for about two weeks at which point we can remove at home. He may experience some slight lymphedema (swelling of the limbs) although unlikely.

True to any doctors office form we ran about an hour late with Dr. Ross. We then moved over to see Dr. Hwu who fit us in since we missed our scheduled appointment an hour before. If I had any doubts about what direction we were taking Cleve's care in, it was all erased after visiting with her. She has a way about her that makes you feel completely at ease and confident in the current course of treatment. She has a confidence about her without the slightest tinge of arrogance which is sometimes difficult in brilliant people. She makes me feel comfortable and hopeful and thats the type of person I want to surround myself with. We told her that Dr. Hamid in L.A. had planned to radiate his sacrum after the axillary node has been removed and then put him on ipilumimab. She said she has decided against that treatment plan because in studies patients have only shown about a 5% decrease in tumor size when put on the medication along with Zelboraf, the trial drug Cleve has been taking that is now FDA approved. She also said that one of the main side effects of this highly toxic drug is colitis, which Cleve will also be experiencing as a result from the radiation to the sacrum. She had a patient who did both, he perforated his bowels and ended up dying. She just doesn't want to take this chance with Cleve who is otherwise healthy. So, to recap, we are removing the nodes from his axilla and radiating his sacrum back at home, which in theory should stop the progression of the tumor in his sacrum. The next step is to have Cleve continue taking the Zelboraf and then have PET scans performed every two months to keep an eye on any metastasis. We asked Dr. Hwu about why, after a few weeks of reprieve the tumor started growing again. She said that B-RAF mutation was being suppressed by the drug and should continue to do so as long as Cleve is taking it, but that other cancer cells within the tumor are mutating causing the tumor to grow again. When the tumor is removed tomorrow it will be tested for other gene mutations which there may be a medication for, but not to hold our breath. As long as we follow this plan we should be able to catch anything new that pops up, and between Dr. Hwu, Dr. Hamid and Dr. Poisson, we should be able to implement the next steps of his treatment fairly quickly.

Our last appointment of the day we were too late for, we arrived at the office at 5:10 and they closed at 5:00. This was his pre-anesthesia appointment. So, this will be done when he checks into the hospital at 6:15 tomorrow morning.

All in all, I feel like we are back on track and getting the best possible treatment that we can get Cleve. That optimistic button has been pushed again. It's a grueling, tough battle, but we are not backing down from it. You know, one thing I have noticed while in Texas is that in the particular area of town we are in, it is FULL of hospitals and very sick people. We are surrounded by the University of Texas hospitals, the Shriners hospital, St. Lukes, city block after city block is hospitals. So many sick people fighting illness or for their life. It puts life into perspective very quickly because it seems that there is always somebody worse off than you are that you just walked past, and when there are shuttle vans running 16 hours a day to get patients from their hotel to their hospital and then back again. It's a very humbling experience and I hope and pray that none of you ever have to go through it. So with that being said, please take care of yourselves and your loved ones. And one last thing, Walker and Gavin, mommy and daddy love you and miss you very much. We'll see you soon babies.

....

Caught an early flight this morning to Houston and have arrived safely. As I was sitting on the plane, left to my own devices, a sentimental streak came up on me. I got to thinking of how I missed the good old days of no major worries. My only worries were my homework, sports and what I would wear the next day. Before having to worry about nauseating stomach aches and the beginnings of an ulcer. Sleepy tired days due to sleepless nights when you're praying to fall asleep but unable to turn that switch off in your mind. Knowing that he is staying strong for me just as much as I am trying to stay strong for him. And when those defenses fall and the optimism recedes just enough, thats when the gravity of the situation hits you. Then I remember that God never gives us more than we can handle. I'm sure there is a lesson to be learned here if I would just listen. Maybe its love the one you're with, don't take loved ones for granted, or live life to the fullest. Whatever the lesson is we are taking one day at a time and its time to turn the optimism button back on. Tomorrow is a new day with hopefully better news for us. We begin with our pre-op appointments and will get to speak with Dr. Hwu and maybe get a better idea about any possible treatment options. Its time for some good news. Thanks for all the love and support. Talk at ya soon.

Here we go...

Like I said in my last post things can change very quickly, and so they have. We have decided to have Cleve's surgery done in Houston at the advice of our oncologist here in town, we also feel better about this decision since we already have formed a relationship with the doctors down there, specifically Dr. Hwu. We are, as we speak finalizing travel arrangements for the trip down next monday. Cleve will have his pre-operative appointment on tuesday, including a visit with Dr. Hwu, a blood panel and anesthesia clinic. Then, on wednesday Cleve will undergo surgery to finally have this horrible, life sucking tumor removed from under his arm. We anticipate about a weeks stay in Houston if all goes well and according to plan. Keep your fingers crossed!

Cleve has also resumed taking his medication. His liver functions test showed some slight improvement, but under Dr. Hwu's recommendation we began again at full strength immediately. Apparently she has had experiences in the past where a patient was taken off the medication for a two week period to allow the liver to recover, but the tumors exploded in number and she did not want this to happen to Cleve. It also sounded like Dr. Hwu may have a study that would be right up Cleve's alley, it sounds like a study that her husband, also Dr. Hwu, is conducting. That would be wonderful to get Cleve into another study since the one he was in just ended. If it turns out that he will not qualify, then Dr. Hamid in L.A. would still plan to put him on the B-RAF med plus ipilumimab. We still have options available to us. We'll just have to consider the fact that this medication didn't work as well as we had hoped, as a little bump in the road. We were hoping for the average of ten months out of this medication, instead we got under two before it started growing again. I will do my best to keep you updated next week as Cleve gets out of surgery and how he is doing. It should be entertaining since we all know what a lovely patient Cleve makes. Wish me luck!  Until next time....

Two months in...

Hello and welcome back...it's been awhile.

Cleve is currently in L.A. waiting to come back home tonight, thank goodness, I don't sleep very well when he's gone, I don't know how many times I woke up last night. Yesterday Cleve had his scans done, an MRI and PET scan, and he met with Dr. Hamid this afternoon. The results of the scans were not exactly what we were hoping for unfortunately.

The PET scan showed that the tumor has shrunk but only by a few centimeters, it currently is just under 5 centimeters. At the last appointment, both Cleve and his doctor could not feel the tumor, but now, again it is palpable and it aches when Cleve is overly active. Did it shrink and then come back again? We aren't sure but this is what we are thinking happened. The MRI showed that the tumor in Cleve's sacrum is getting bigger as well, although Cleve is not feeling any pain. We are assuming, and what it looks like on the film, is that the tumor is maybe eating away at the bone and not causing any swelling around the nerves, hence the lack of pain. But we don't have a very clear idea of what is actually happening back there. We were hoping for a better result from the medication, it's hard not to feel a little disappointed. So, where do we go from here?

For right now, the plan is to remove what is left of the tumor from the axillary region. Portland actually has a TIL therapy program, which is a banking of the tumor for future use. So it looks like we will be traveling to Portland to have the tumor removed, return home, begin radiation treatment on his sacrum and introduce a new medication called ipilumimab. There is one little snag though. Because of the medication he is currently on, his liver functions have decreased. In order to add the the ipi. medication into the mix his liver has to be functioning properly. Cleve will be going off his meds. for two days to give his liver a chance to recover. Dr. Hamid will then lower the dose of his meds. and see how his liver reacts. Once his liver is stable we can add in the ipi. We can do all this while we remove the tumor from his under arm and hopefully not waste any time in between.

My question was why are we keeping him on a medication that has thus far shown us mediocre results? Cleve said the theory that we are working on is that its shrinking the tumor slightly, but also restricting the growth in other locations. Ok, I can handle that, plus we are adding another medication. But in the case that this doesn't work, Cleve said that Dr. Hamid has several other options he's waiting to implement, in fact, the ipilumimab was an option that he was hoping he wouldn't have to use yet, but here we are. At least we have options.

I want to give a big thank you to David and Jim for escorting my husband to L.A. for this appointment. I would have loved to have been there by his side, but i couldn't ask for better replacements. Thanks guys. Also, another very important person who has been an amazing friend will be doing surgery on my sister to replace her hip (at age 36). Thank you to Yaser for taking care of my sister this friday. Extra prayers and positive thoughts would be appreciated for her as well.

I will keep all of you posted as to any changes, like i said, this is what we have planned at this time. Things could and may change at a moments notice. Until next time...

Round Two!

As I promised, Pictures of the sunburn on Cleve's legs and the blistering that occurred.

Cleve traveled down to L.A. this last wednesday to get his second round of medication. It was just a day trip since there were no scans scheduled. Dr. Hamid was pleased with Cleve's progress and a little disgusted by the looks of Cleve's legs. They took photos for documentation for the trial. Another little bit of news is that according to Dr. Hamid the drug will be going public in the next ten to fourteen days. This is both good news and bad news. Its good news because the medication works and now people can have access to it who otherwise could not. This is breakthrough stuff here folks.
Its bad news because once it goes public the study is closed and we are no longer a part of it. This means that Cleve will not receive the benefits of being a part of the study anymore. Once the study ends Cleve is able to have one more round of medication, then we pay for it which is about $120,000 a year. Insurance does cover a portion of it but it is still an amazing expense for a brand new medication. So, before all this happens Cleve is scheduled to go down to L.A. one more time to have a PET scan and an MRI covered under the study. At this time, we will see what size the tumors are, if they are still there, where they are at and he will be re-staged depending on the results. If there is any tumor left under his arm we will more than likely head down to MD Anderson in Houston again to have it resected and kept for future possible treatments made from the tumor (possible vaccines), and then we will more than likely radiate his sacrum to inhibit any melanoma cells growing and dividing there.
Dr. Hamid also expressed a desire for Cleve to still be an active patient of his. This means we will still go down to L.A., just not on a monthly basis. Just enough for the brilliant Dr. Hamid to keep an eye on him. He would like to do this because when eventually the medication stops working (this is the nature of the medication) The cancer cells will return rapidly and Dr. Hamid is keeping his eye on upcoming studies for Cleve's particular situation. This way we can act quickly instead taking another two months like we did last time looking for a place of treatment. We love this idea! In the mean time Cleve will continue seeing his wonderful oncologist here in Medford, Dr. Poisson. We are so lucky to have such wonderful doctors taking care of Cleve.
It is so nice to have some good news for once, especially with all of the heartache cancer is causing to families everywhere, especially little Faith Fulmer and Ethan Jostad here in Medford. These are two children who are victims of this evil disease, and unfortunately their battles are not going as well. They have become the face of childhood cancer here in Medford. They are incredibly strong children who have put up a heck of a fight and continue to do so. They are little miracle angels, and it is not fair for cancer to affect children. These are just two cases of childhood cancer but there are so many more that are not publicized. Im sure every person out there has been affected by cancer in some way, either directly or through family members and it is devastating. So next time you see one of those buckets from the american cancer society, or a store asks you to donate your change to the children's miracle network, please help out and donate so we can find a cure for this horrible disease that takes the lives of our loved ones. We need research, and the researchers need money to conduct their studies. Please help out in any way you can, even if you are donating your time, you are helping more people than you can imagine. I am including the links on facebook to the pages of Faith Fulmer and Ethan Jostad. Check them out and see just how incredibly brave these little ones are.
http://www.facebook.com/pages/Team-Ethan-Jostad/138676326210436
http://www.facebook.com/pages/Faiths-Friends/120764287940176
If I have somehow copied and pasted wrong and you cant get to the pages just go to my page and you can find the links there from my info page.

The latest...

Gosh, sorry I havn't posted in a while, not much has been happening though, which i guess is a good thing...no news is good news I guess.
In my last post I talked about some side effects and how Cleve hasn't really had any, well, I posted too soon. That very night Cleve developed the rash I was talking about. There was nothing significant about it other than it was there and mildly itchy. He also experienced fatigue and often found himself dozing at odd times of the day, he also continued feeling the muscle aches, but nothing a little naproxen couldn't fix.
Last weekend we went to the fair for a few hours and then up to Lake of the Woods for a mini vacation. Cleve wore his hat and sunscreen but apparently it wasn't enough, the docs were not lying about that photo sensitivity. Cleve must have rubbed the sun screen off his hands because he got a doozy of a burn there and a bit on his wrists. Also, while out on a paddle boat, that was completely covered I might add, Cleve got a bit of exposure on his shins where his pants rode up while pedaling. After reading a story to Walker and Gavin tonight, Walker accidentally popped the blister on his shin and it drained.....really gross. Anyway, I wanted to share the grossness with you all so of course I took pictures. I only got the wrist burn/blister, i'll have to snap a pic of his shins to post as well, but for now, this is what i got.

Nasty, eh?
Our vacation next month is in a sunny place which we had planned way before we new about the cancer so we are going to have to be extra on it about keeping him covered and out of the sun.
And thats about it for the update. We have just been going about our daily lives and building memories. I apologize if the posts are a little far apart, I am updating you all as things happen and thankfully not a lot is happening at the moment with Cleve. But please keep checking so you don't miss anything in the future. Until next time....

after a weeks worth of treatment...

Hello friends and folks,
Cleve has been faithfully taking his medication twice a day for one whole week and writing down in his log the dose, time and any side effects. For a man who hates to take pills, this is quite a feat, yay Cleve! We are also happy to report that it feels like the tumor under his arm is shrinking. It started out as a large orange size, we have felt it shrink down to walnut size and now feels to be about grape size. He has had some times of shrinkage and then it feels as if it swells again, but for the most part it has reduced in size a great deal. Cleve is also noticing less pain in his lower back and rarely takes the narcotics anymore, mostly tylenol to relieve any pain and/or discomfort.
Side effects of the medication have been minimal. Cleve has experienced some general fatigue and mild myalgia's. These are far less worse than what could happen, for instance, nausea, vomiting, severe photo sensetivity, skin rashes and squamous cell carcinoma. Cleve has been very good at keeping covered up, sunscreen applied and generally out of the sun. He however has not had any major check-ups. This will happen next week with his oncologist here and then in another two weeks in L.A. In September we can look forward to his next set of scans which will give us visible proof that the tumors are indeed shrinking. So until then we will be enjoying our summer with camping and a much needed vacation in August. I hope everyone is having a great summer and remember to keep that sunscreen handy.

MRI results and photo's

Cleve had his MRI done this morning and had it read today as well. It showed that the lesion in his sacrum has grown to nearly 5cm, that is just slightly smaller than his axillary lesion. It is currently pressing on his nerve causing numbness and burning along his left leg. This also confirms that it is a metastasis just as we had thought, but for some reason does not show up on CT scans...good information to know. The scan will now be sent down to Dr. Hamid for his records. He has been taking his medication as scheduled so we should be expecting shrinkage in tumor sizes as well as some pain relief. He currently is still taking pain medication with the exception for tonight, he is on call and cant have any narcotics in his system. Its gonna be a rough night...poor guy. Anyway, I am also posting some pictures from our last visit to L.A. and our evening in Beverly Hills....enjoy

Cleve's new medication...28 days worth

Cleve at the dermatologists office

Having a glass of wine at Cut

A small street off of Rodeo Drive

Looking down that same street

Cleve proving we are indeed on Rodeo Drive baby

The Beverly Wilshire where Cut is and where pretty woman was filmed

Starting medication

Well, we finally got the medication today, his first dose will be taken tonight. His brain scan showed up negative which is fantastic. I actually was a bit worried because he had been acting a bit forgetful and confused lately but I think that is due to the pain medication, he has never taken anything like it before. His CT scan showed the mass under his arm....yep, still there and about the same size. The funny thing is that they can not see anything on the CT regarding his sacral lesion. Dr. Hamid has ordered an MRI of the area which Cleve will have done at home in the next few days. That being said, the pain and nerve involvement is not less than what it has been and still requires some heavy duty pain meds. Cleve will also follow up with his oncologist here in medford and then return to L.A. In about a month for another round of meds. Cleve also met with a dermatologist down here for the study and he was great, very funny. Now we just wait and see about any adverse reactions and see how he tolerates the medication. Let's hope for minimal side effects.
(I'm trying to add some pictures but it's not letting me so I will do it later when I'm at my actual computer...stay tuned)

Starting treatment!!

So we finally got the call that we have been waiting it seems like forever for, the call that says Cleve has been accepted into the study. Thats the good news, the bad news is that we leave monday to get to his appointment on tuesday at 8am. We're going to miss the 4th of July, my most favorite holiday at the house and miss out on the bbq we had planned. But, if it means Cleve gets treatment, then its all worth it. Cleve has been in a great amount of pain lately, had an epidural done on monday and has now resorted to pain medications which he absolutely hates to take. The epidural made him feel better for about a day and then the pain shot right back up. It is mostly in his back which has evidently swelled and is now causing pain and neurological symptoms in his feet and legs. The axillary area is more of a secondary pain, he feels it when his back calms down, which isn't much lately. Sleep has been hard to come by as well, so this news could not have come fast enough. He will start out with a dermatology appointment at 8am on tuesday, followed by an MRI at 8:45 (at a different location...its gonna be tight!), then a CT and 12:15. On wednesday he will have a blood draw, EKG and scan review with the nurses. Then we will see the doctor and receive his first dose of medication. We will then be home for a busy day of work on thursday for us both and then walkers green one belt testing on friday. I will update you all should any other news come about. Have a happy fun filled 4th everyone (Sorry Leslie, you probably dont get fireworks in Italy. Boo) Be safe and love to you all.

Helpful hints and tips as summer approaches

Since today is the first day of summer I thought I would create a post on what we all can do to keep us and loved ones safe this sunny season. I am including helpful hints, pictures and self checks you can perform. I am also including some pictures of our most recent trip to L.A. I hope you enjoy

1) What is melanoma?

Melanoma is a cancer of the melanocytes, which are the cells that produce melanin, the normal pigmentation in the skin, eyes and hair.

2) How does melanoma differ from other kinds of skin cancers?

Of the three major types of skin cancer (basal cell carcinoma, squamous cell carcinoma and melanoma), melanoma is the least common but the most dangerous because it carries a far greater risk of spreading to other parts of the body (metastasizing). Melanoma is almost always curable if it is recognized and treated early. If it is not caught early, melanoma can spread to other parts of the body where it becomes hard to treat and can be fatal.

3) What causes melanoma?

Among the factors that predispose one to melanoma are:

• A personal or family history of melanoma
• A large number of moles
• Irregular or atypical/unusual looking moles
• Having fair skin, light hair and eyes, and a tendency to sunburn easily
• A history of blistering sunburns in childhood or adolescence 

 4) What are the warning signs?

The classic warning signs of melanoma can be remembered with the letters A-B-C-D-E. Check your moles regularly and visit your dermatologist if you notice any of the following indicators:

• A is an Asymmetrical mole, meaning one half looks different from the other half
• B stands for a jagged or irregular Border
• C represents a variety of Colors, meaning the mole may show shades of brown, black, white, blue, or pink
• D means a large Diameter – greater than a pencil eraser. D can also mean very Dark
• E is Evolution. A significant change in the appearance of a mole or the presence of itching, bleeding or other symptoms

 5) Does a mole have to show all of the warning signs to be of concern?

No. Many melanomas exhibit only one or two signs.

6) Are there times when a melanoma does not exhibit the typical warning signs?

Yes. A nodular melanoma may have none of the A-B-C-D properties. It may start by looking like a blood blister or pimple on your skin. If you notice a growth that feels firm to the touch, is elevated above the skin surface and continues to grow for more than two to three weeks, have your skin checked by a dermatologist to rule out this rare but agggressive form of the disease.

7) Can melanoma be prevented?

Melanoma cannot be completely prevented, but you can decrease your risk by reducing sun exposure, especially during the mid-day hours, wearing protective clothing, using sunscreen with a high SPF, and avoiding tanning beds.

 Speaking of tanning beds, is there a connection between indoor tanning and melanoma?

The National Cancer Institute estimates that long-term exposure to ultraviolet rays from tanning beds or the sun increases the risk of developing skin cancer. Women who use tanning beds more than once a month are 55 percent more likely to develop malignant melanoma. 

 9) How often should one have a full body scan by a dermatologist?

For most people, an annual full body skin check by their dermatologist or primary care physician is sufficient. If a person has a personal or family history of melanoma, a large number of moles, or fair skin that burns easily, more frequent examinations may be needed. If you notice a new mole or a significant change in an existing mole, make an appointment with your dermatologist or primary care physician to have it checked. Don’t wait.

10) What’s the good news about melanoma?

The good news is that if it is caught early, melanoma is highly curable. The five-year survival rate for people whose melanoma is detected and treated before it spreads is 98%.

 Jay M. Ritt, MD, is a Board certified dermatologist at South Shore Dermatology Physicians. 

L.A. Trial

We saw dr. Hamid today at the Angelas clinic in L.A. He basically agreed with Dr. hwu's diagnosis and treatment plan except he has an open trial for Cleve whereas the trial in Houston has been closed due to occupancy. So this is very good news. It is an expanded access trial for the B-RAF drug only. In Dr. Hamid's words, Cleve is salvageable and is hoping for a "home run" with this approach, meaning complete irradication. So the plan of action is to begin tests in order to confirm that he is a candidate for the study in about a week and a half. We will do a few rounds of the drug, excise the tumor, radiate the lesion in his sacrum and continue with the medication until it no longer is effective for him. When it no longer is effective or the tumor recurs we will develop a new plan of action. As to what that plan of action is, we don't know yet. Th doctor said that there will be treatment options in three months that are not available to us today. Cleve talked about survival rates with a stage IV cancer and the doctor said very confidently...we are going to change those statistics. This man was all about confidence and was very cut to the chase. So thus far, this is where we stand. We are finally getting into a study for treatment after six long weeks. And everybody agrees that we need to begin treatment as soon as possible. So, here we go...

Quick update

And yet another quick update. We finally got the results back on Cleve's B-RAF test and he has tested positive for the gene mutation. This means that he can take part in any study using the B-RAF drug which has shown to literally melt away most of the tumor. Tumors with the gene mutation respond better than tumors without, studies show. Our next hurdle is to find a study that involves this drug. We have an appointment in L.A. at the Angeles clinic next week. New York could not get us in for two to three weeks so we are really hoping for a promising study in California, we need to get started on treatment, like, two weeks ago. Alright, thanks folks, I'll keep you updated...

When it rains it pours...

Well, I thought it was about time for an update. We are still waiting to get a result from the B-RAF test and thanks to Cleve's boss Dr. Traul we now know why its taking so darn long. Apparently they have run the same test three times now and still can't get a clear read. They may need another sample from the tumor. Also, because of this we have missed out on the case study in Houston, so we will not be traveling there it looks like. We are now looking at different locations like L.A. and New York. When we get more information regarding those places I will pass it along. Another new bit of information is we now know for sure that Cleve is a stage IV cancer. His lower back has been causing him pain and discomfort, that is conformation that the tumor is growing there too. As for his axillary lymph node, it continues to grow. When he holds his arms up, you dont even need to push to feel it anymore, it feels larger than my hand and that is just the part near the skin where I can feel. So, i guess this leaves us back at square one, trying to find a place to get treatment (we are opting not to go to Portland because we disagree with how he would like to proceed with treatment) and feeling the pressure of time. It seems nothing can happen fast enough and nothing is. I apologize for the negative tone of this update but I/we are feeling a bit defeated at the moment. We are simply hoping and praying something will go our way and quickly.

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.

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.

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...