New Stage IV Metastasizing Melanoma Husband

NailBitingHusband said:

Started RO5185426 / PLX4026 in March 2009
Hi GinSue,

Sorry for the delay in getting back to you, but we just got back from the initial treatment at UCLA for the new Phase I trial for this B-RAF positive drug. My wife seems to be responding well so far - no side-effects whatsoever. This is a phase I trial for the same Roche drug, but it includes taking some everyday drugs, too, to see how it would react in patients under "normal" situations.

I'm glad to hear that your tumors have reduced in size, and that no further spread has occurred. I've been researching the "next" step, should PLX14026 stop working. It appears that those who are B-RAF positive likely also have the MEK mutation, so I am seeking our MEK options. UCLA has set up a MEK option for those that do drop out of the B-RAF drug. The MEK drug is made by GSK (Glaxo Smith Klien).

I've also had my wife's tissue submitted for genome sequencing so that we can know what her specific mutations are - I think it would be much better knowing which drug inhibitors to focus on rather than to be constantly guessing and taking unnecessary tests.

We were offered a slot for the Phase III trial in Dallas, but decided that the Phase I for the same drug was a better option since all of it's patients got the trial drug (only 50% of Phase III patients get the trial drug, the rest get chemo). I'm glad you're in the Phase II trial - that one, too, guaranteed you got the trial drug.

I'll let you know how things progress. Please stay in touch.

Best of luck to you!

Mike
Michael.C.Stratos@gmail.com

NailBitingHusband said:

Plan B in case PLX4032 doesn't work
I've been speaking to various doc about what to do if/when the B-RAF gene konks out and the "driving" gene rotates to the next "driver" mutation. Appears that those with a B-RAF gene mutation are likely to rotate to the MEK mutation. There are several hospitals starting MEK mutation drug trials, so keep an eye out for them.

Always good to have something in your hip pocket.

M

NailBitingHusband said:

Wow!
That is the best news I've heard in months! I am so happy for your wife and for you!

We're plugging along at UCLA. My wife is getting over a severe and painful rash, and joint pain (PLX's side affects), and she's starting to look and feel normal again. We head back to the East Coast on a red-eye Monday night. Just spoke to my son - he's working on a school project that depicts George Washington crossing the Delaware. I feel like a schmuck for not being there, and I keep telling myself I can't be in 2 places at once, but that doesn't help. Sucks. We go home on a red-eye Monday night.

I'll go and tell my wife your good news. That should bring up her spirits. You hang in there!

BlakeA said:

Reading your stories is inspiring.

My wife is 36 years old. She had a mole removed from her forearm in 2006 that tested positive for melanoma. Her scans later showed nothing had spread. In September 2009, she discovered her entire underarm area was swollen. they did several surgeries, removing alot of infected lypmh nodes. My wife is now stage 4 and has gone through Chemo, Radiation, and hormonal therapies. We also just delivered a baby boy in December 2009 and the melanoma crossed the placenta. The doctors are hopeful his immune system killed the cells. Time will tell.

We were referred to Dr. Steven O'day in Santa Monica last week. He tested her for BRAF and HLA typing. He said we have a 50% chance at being positive for those clinical trials. The other trial he said is starting in April at John Wayne Cancer Center is the Ipilmumab drug. I think he called it a compasionate study meaning they are close to FDA approval but still want to offer the drug.

My wife has a spot on her spleen, and in several lymph nodes in her abdomonal area. Also one nodule in her back/hip area above the belt. Her MRI CT and PET scans didnt show anything in the lung, liver or brain.

Dr. O'Day said these clinical trials are doing great things. He also said if we can get these drugs to work, we can prepare for the next round of new trial drugs upcoming. We are hopeful. He also said typical life expectancy statistics are different because of the newer drugs that are being offered.

I am glad I found this message board. Feel free to reach out if you would like to share your story or chat.

blakeinchina@yahoo.com

I spoke to "NailbitingHusband" and his wife earlier on the phone. Was good to chat with both of you. I know what you are going through. Keep in touch.

JR1949 said:

My wife is stage IV metastic melanoma
Hello,
My wife had a malignant mole on her forehead that was melanoma April 1991. The mole and boundaries were excised along with lymph nodes on that side. She faithfully returned for all scheduled followup visits since 1991 and was cancer free until June 2009. The dark spot on the xray was diagnosed after CT scan, PET scan, MRI and biopsy as stage IV recurrent melanoma with a tumor on her esophagus and 2 on her lung. Her oncologist told us the best treatment was IL2 (Interleuken 2) and there was a 20% chance that she would respond. However he told us that he had patients who had been 5 - 10 - 15 years cancer free. IL2 is a very agressive chemotherapy, it has side effects of hausea and vomiting, extremely itchy skin, body aches like you have the flu, thinning hair, shakes like you are in a refrigerator and hot flashes. I've told you the bad part, the good part is that after two courses of treatment (2 weeks in August, 2 weeks in November) my wife's two CT scans revealed very significant reduction (over 50% each time) of 2 tumors and removal of third one. She is scheduled for another course of treatment in February. You may want to ask your oncologist about the Interleuken 2 chemo. We believe in it.

Keep a positive attitude and pray because that is what got us through our journey. This CSN bulletin board is also a great resource for information and support.

JR

ScotsIrishSurvivor said:

Another Melanoma Story
I'm a 46 year old woman that was diagnosed with a rare melanoma in 2005. In early February, I had an xray taken of what we thought was a possible fracture and discovered it was a bone tumor. Having no insurance, I was referred to one of the state funded hospitals and a bone biopsy confirmed that the previous melanoma had metastasized after 5 years. I have lumps on my shoulder that have not been biopsied. No further testing is scheduled until after Easter.

After reading all the above entries and seeing how quickly most of the cases were handled, I am left wondering if lack of insurance (which I lost this past August) is the catalyst that will kill me before the melanoma will be completely diagnosed! ? !
We have been turned down for financial aid because we have a home, a car and a small retirement fund. That IRA would not even cover the surgical biopsy bill !
Very sad and depressed over this situation and praying that others do not get treated like this.

My prayers also, to all that posted here before me.
Every bit of info and support helps.

NailBitingHusband said:

Hang in there!
What options did your doctor give your you guys? Choosing the right doctor and the strategy that makes the most sense for you / your husband is key, and the only way to do any of this is to research this yourself. Melanoma was been a wasteland for so long for doctors - there had been little to no advancement in treatment until only just recently. As a result, chosing melanoma as specialty was a dead-end for doctors. Now there is a lot of excitement in the field because of new discoveries. You've got to be aware, though, that most of these specialist are "clinicians", more research doctors than you're used to. That means that their bedside manner sucks, and they think outloud too much. Don't let that get you down. Another thing - these doctors are commited to specific philosophies. What I mean is that many of these doctors will not likely recommend strategies outside their area of expertise. That's why some doctors and hospitals never have clinical trials on treatments "opposed" to their philosophy (ie: an IL2 doctor likely wouldn't recommend ippi or what I call "genome-oriented" treatments like PLX4032). This is why your own research is absolutely necessary.

It amazes me how uninformed we have all been about melanoma. We're told to watch for moles, moles, moles. And since my wife contracted melanoma (the doctors believe it originated / is a lung primary), I've heard so many stories about it NOT starting on the skin, but on an organ in the body, somewhere on genitalia, in the brain, in the eye and bones. Now you're saying your husband's started on his thumb? Whenever someone hears my wife has melanoma, they ask "where is the mole" and assume it's one of those cancers that's "not a big deal". Doctors and associations associated with melanoma are not, IN MY OPINION, doing a good enough job informing the public about melanoma. Something has to be done!

M

NailBitingHusband said:

Support
Don't get down - there are options out there. Have you contacted the various support groups out there? Here is a link to a bunch of them, including one's that provide financial support, that I found at the National Cancer Institute's support group site:

https://cissecure.nci.nih.gov/factsheet/FactsheetSearchResult8_1.aspx?~UHViTG5rPTguMSZDYW5jZXJUeXBlPTk=-VJgOelWdve4=

and here is a link to the American Cancer Society's support group site:

http://www.cancer.org/docroot/ESN/ESN_1.asp

You're not alone. Unfortunately, it seems that the Melanoma "group" is getting crowded.