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.