New Stage IV Metastasizing Melanoma Husband

NailBitingHusband

I'm confused and angry today at our oncologist and need advice as to what I should do about it.

My wife, Cheryl, was diagnosed with Stage IV Melanoma Cancer on 11/30/2009. It appears to have started in her lung, and matastasized to a lymph node in her lung and then her liver. We live in Virginia. The first consultation with our oncologist at a respected NYC hospital (yeah, that one) was on December 4th. We met him again Dec 7 & 8. He explained the "success rates" of traditional treatment and for one alternative -a Phase III clinical trial he's overseeing that, in his opinion, was a "break-through" melanoma drug with a huge success rate. He recommended we wait for the trail to began just after 1/1/2010. Though it was a long time to wait for treatment, my wife finally said OK.

On December 9th my wife had an appt with an GYN oncologist. A couple of days later her pap smear biopsy came back with evidence of melanoma cells. Cheryl's oncologist was informed, but he wasn't worried - stay on track for the clinical trial.

Cheryl called the oncologist 1/4 about the date of the trial. She was informed that it was now scheduled for 1/12. On 1/7 he informed her the trial was delayed 3 weeks. The oncologist called last night (1/12) and told Cheryl he was no longer sure when the trial would start. He counseled her that there was no treatment he could recommend at the NYC hospital, but did explain that he had spoken to an oncologist at a Tennessee hospital about the Phase II trial for the same drug he was working. He gave Cheryl the TN oncologist's phone number (it was the hospital's general number) and recommended she call and pursue treatment there. We called the TN hospital but were told Cheryl was not eligible because the Phase II trial is for people who have failed a previous treatment.

How can a doctor dump you and leave us twisting in the wind like this? And to top it off, now TN can't take her because she doesn't fit the criteria! We have lost 1 1/2 months with no treatment with these yoyo's, and my wife's cancer does nothing but grow - is this how it works?

SRHadden

I know exactly what you
I know exactly what you meant. My wife has Stage 4 (she's only 33) that started in her lungs. There was this great trial from Dr. Jeffery Weber in Florida, she had the right tissue type, it was a 50% chance she would have the right tissue type blah blah. It should be ready in 3 months. Nothing, nothing.

Try to find a melanoma oncologist who is up on current trials. We dumped our old oncologist when she went to stage 4 because the guy was not a melanoma specialist and had to use to web to lookup trials. This idiot should've just recommended we see a better doctor. Fortunately we found one at UCSF.

Get a copy of all her medical records and start looking for trials with your doctor. If he can't suggest any, then find a new doctor.

SRHadden

I know exactly what you
I know exactly what you meant. My wife has Stage 4 (she's only 33) that started in her lungs. There was this great trial from Dr. Jeffery Weber in Florida, she had the right tissue type, it was a 50% chance she would have the right tissue type blah blah. It should be ready in 3 months. Nothing, nothing.

Try to find a melanoma oncologist who is up on current trials. We dumped our old oncologist when she went to stage 4 because the guy was not a melanoma specialist and had to use to web to lookup trials. This idiot should've just recommended we see a better doctor. Fortunately we found one at UCSF.

Get a copy of all her medical records and start looking for trials with your doctor. If he can't suggest any, then find a new doctor.

Kisma

SRHadden said:

I know exactly what you
I know exactly what you meant. My wife has Stage 4 (she's only 33) that started in her lungs. There was this great trial from Dr. Jeffery Weber in Florida, she had the right tissue type, it was a 50% chance she would have the right tissue type blah blah. It should be ready in 3 months. Nothing, nothing.

Try to find a melanoma oncologist who is up on current trials. We dumped our old oncologist when she went to stage 4 because the guy was not a melanoma specialist and had to use to web to lookup trials. This idiot should've just recommended we see a better doctor. Fortunately we found one at UCSF.

Get a copy of all her medical records and start looking for trials with your doctor. If he can't suggest any, then find a new doctor.

Doctors
I am so very sorry to hear about your troubles with your doctor. I can't understand why some doctors will go out of their way to do everything they can for a patient where as others make you feel like your bugging them.

I just wanted to say that I hope your search in finding a doctor proves successful and that you aren't left with a bitter taste in your mouth for doctors all around.

I wish I knew someone, but your not in my area.

My thoughts are with you.

NailBitingHusband

SRHadden said:

I know exactly what you
I know exactly what you meant. My wife has Stage 4 (she's only 33) that started in her lungs. There was this great trial from Dr. Jeffery Weber in Florida, she had the right tissue type, it was a 50% chance she would have the right tissue type blah blah. It should be ready in 3 months. Nothing, nothing.

Try to find a melanoma oncologist who is up on current trials. We dumped our old oncologist when she went to stage 4 because the guy was not a melanoma specialist and had to use to web to lookup trials. This idiot should've just recommended we see a better doctor. Fortunately we found one at UCSF.

Get a copy of all her medical records and start looking for trials with your doctor. If he can't suggest any, then find a new doctor.

Here's my "Brain Dump"
I'm sorry not to have replied earlier, but I've spent the last 48 hours hunting for clinical trials and programs that make the most sense for my wife. I, too, dumped our oncologist. I focused on a Roche clinical trial for RO5185426 - it's for people who test positive for the BRAF V600E mutation - my wife has already tested positive for it. The drug was previously known as PLX4032 when Plexxikon owned it, but with the launch of Phase III Roche exercised their right to buy it. It's "advertised" as having a 70% success rate. I know not to believe the hype, but nothing out there is as optimistic. I understand their concern about it is it's durability.

They have 2 Phase III trials currently underway - one at Texas Oncology (Dallas) and the other at The Angeles Clinic (Santa Monica), but these trials are only for drug naive (see, I'm learning) patients (my wife hasn't been treated yet). There are a bunch of Phase III trials at other hospitals about to open, including one at Moffit in Tampa (I recognized your focus on Florida). You get a 50/50 shot in this trial - 50% get the RO5185426 and the other 50% get Decarbazine (sp?).

I found at least one Phase II trial open and looking for patients - the Phase II is open to previously treated patients. This one is superior to the Phase III in my mind because 100% get the RO5185426. It's Vanderbilt (Nashville) that has the openings.

I got my wife into a soon to be launched Phase I trial. I know - Phase I? Yeah, it's a Phase I trial but it's use a Phase III drug - the same RO5185426 in the same dosage as the Phase III trial. The catch is there is a cocktail of drugs that is taken with it. I checked out the drugs in the cocktail and found them tame. 100% get the drug, and untreated patients are welcome. The trial is at 2 Boston hospitals, Vanderbilt (thats where we're going), and Dallas.

I've also found that a bunch of other drug companies are making copy-cat drugs of RO5185426, but their in early Phases. Google PLX4032 because most of the data is listed under this "name.

Good luck!

Mike

NailBitingHusband

Kisma said:

Doctors
I am so very sorry to hear about your troubles with your doctor. I can't understand why some doctors will go out of their way to do everything they can for a patient where as others make you feel like your bugging them.

I just wanted to say that I hope your search in finding a doctor proves successful and that you aren't left with a bitter taste in your mouth for doctors all around.

I wish I knew someone, but your not in my area.

My thoughts are with you.

Thanks!
What bothers me is that I grew up thinking that doctors and hospitals were noble, but now I'm finding out the real truth about some doctors. Don't get me wrong - I've met some wonderful doctors during this experience, but unfortunately I've also met at least one schmuck, too. I've concluded that our original doctor just didn't care about my wife, and likely not about his other patients - that he see them as a means to an end. That end is the financial pot of gold for sponsoring successful clinical trials that lead to new drug launches.

Our now ex-oncologist only cared about filling his trial quotas. His actions upset me so much that I didn't even look at the other trials at that hospital. When I eventually did look I found that our doctor's colleagues had on-going trials that were showing evidence of real success. He didn't even suggest we consider his colleagues studies! He didn't care about anything other that his studies and his competition with his colleagues.

I don't want to sound bitter, but with him I guess I am. That said, though, I know there are good people out there and in the last 2 days I think I've started to find some.

Kisma

NailBitingHusband said:

Thanks!
What bothers me is that I grew up thinking that doctors and hospitals were noble, but now I'm finding out the real truth about some doctors. Don't get me wrong - I've met some wonderful doctors during this experience, but unfortunately I've also met at least one schmuck, too. I've concluded that our original doctor just didn't care about my wife, and likely not about his other patients - that he see them as a means to an end. That end is the financial pot of gold for sponsoring successful clinical trials that lead to new drug launches.

Our now ex-oncologist only cared about filling his trial quotas. His actions upset me so much that I didn't even look at the other trials at that hospital. When I eventually did look I found that our doctor's colleagues had on-going trials that were showing evidence of real success. He didn't even suggest we consider his colleagues studies! He didn't care about anything other that his studies and his competition with his colleagues.

I don't want to sound bitter, but with him I guess I am. That said, though, I know there are good people out there and in the last 2 days I think I've started to find some.

thinking of you!
I understanding completely. During my surgery a few days ago my new doctor was checking on me to make sure I was comfortable and it was a great feeling. She made me think back to doctor that was not so great and had actually been the cause to my lack for ever returning to the doctor.

I find it sad that there are doctors out there that are in the line of work for the paycheck. We all know the medical field is a huge paycheck, but what they forget is that they are dealing with humans, not animals or lab rats. Heck I have worked in the veterinarian field for years and saw vets treat their patients better then some medical doctors I know.

I hope you able to find what your looking for first and foremost in regards a great doctors that can provided you with the care and compassion you and your wife deserve.

Here's to a calm weekend...

CancerWarrior1960

Stage 4 Survivor
I am on the West Coast in California. I was diagnosed in 2003, my melanoma is very rare. It was on the surface of my eye on the conjunctival tissue. My ocular oncologist gave it a name: Primary Acquired Melanosis, which means it presents itself as pigment areas over the white of my eye. Had 10+ surgeries on my eye, topical chemo eyedrops, and now have no vision in my left eye.

Fast forward to 2006. Cancer metastasized to my lymph nodes in my jaw, and also had a nodule on my lung.

Treatment for me was Biochemotherapy which is chemotherapy + IL-2. Treatment is so toxic that it needed to be administered in the hospital. I spent the first 6 cycles staying 5 days in the hospital and the subsequent 12 months for 3 days in the hospital. This went on every month with no time off, except for the 3 to 4 week interim time. I also did self injections at home with IL-2 and Leukine.

Cheryl's situation is completely different I know, but I have the utmost faith in my Oncologists. The are affiliated with California Pacific Medical Center and their names are Dr. Mohammed Kashani Sabet, and Dr. David Minor. I would be more than happy to give you their phone numbers, but you can also find them on the web.

I completed treatment in March of 2008, and when I was diagnosed with the 4th stage I was given 6 to 9 months. I absolutely have faith in my doctors.

I hope you can find the right treatment for Cheryl and it is so incredibly mind boggling that they are leaving you both hanging like this.

You and Cheryl will be in my prayers, what a fantastic husband you are to her! My husband was my "rock." He would even spend the night on the floor of my hospital room for the first 6 treatments. I have 2 kids and all I could think of was, I want to be here for all the important milestones of their life.
Hang in there!
Suzanne

NailBitingHusband

Kisma said:

thinking of you!
I understanding completely. During my surgery a few days ago my new doctor was checking on me to make sure I was comfortable and it was a great feeling. She made me think back to doctor that was not so great and had actually been the cause to my lack for ever returning to the doctor.

I find it sad that there are doctors out there that are in the line of work for the paycheck. We all know the medical field is a huge paycheck, but what they forget is that they are dealing with humans, not animals or lab rats. Heck I have worked in the veterinarian field for years and saw vets treat their patients better then some medical doctors I know.

I hope you able to find what your looking for first and foremost in regards a great doctors that can provided you with the care and compassion you and your wife deserve.

Here's to a calm weekend...

Wishing the Best for You!
I wish the best in recovering from your surgery (its moments like that where you appreciate a thoughtful doctor!). I was able to find what my wife believes is the best treatment for her at this stage, and we now have a new strategy for going forward. I was frustrated because any semblance of a plan we did have got shot to pieces. Though it's hard to believe considering the subject of this discussion string, we are both very positive people. I want you to stay strong and positive - I really believe in the power of the human mindset.

Good luck this week!

M

NailBitingHusband

CancerWarrior1960 said:

Stage 4 Survivor
I am on the West Coast in California. I was diagnosed in 2003, my melanoma is very rare. It was on the surface of my eye on the conjunctival tissue. My ocular oncologist gave it a name: Primary Acquired Melanosis, which means it presents itself as pigment areas over the white of my eye. Had 10+ surgeries on my eye, topical chemo eyedrops, and now have no vision in my left eye.

Fast forward to 2006. Cancer metastasized to my lymph nodes in my jaw, and also had a nodule on my lung.

Treatment for me was Biochemotherapy which is chemotherapy + IL-2. Treatment is so toxic that it needed to be administered in the hospital. I spent the first 6 cycles staying 5 days in the hospital and the subsequent 12 months for 3 days in the hospital. This went on every month with no time off, except for the 3 to 4 week interim time. I also did self injections at home with IL-2 and Leukine.

Cheryl's situation is completely different I know, but I have the utmost faith in my Oncologists. The are affiliated with California Pacific Medical Center and their names are Dr. Mohammed Kashani Sabet, and Dr. David Minor. I would be more than happy to give you their phone numbers, but you can also find them on the web.

I completed treatment in March of 2008, and when I was diagnosed with the 4th stage I was given 6 to 9 months. I absolutely have faith in my doctors.

I hope you can find the right treatment for Cheryl and it is so incredibly mind boggling that they are leaving you both hanging like this.

You and Cheryl will be in my prayers, what a fantastic husband you are to her! My husband was my "rock." He would even spend the night on the floor of my hospital room for the first 6 treatments. I have 2 kids and all I could think of was, I want to be here for all the important milestones of their life.
Hang in there!
Suzanne

Thanks for the encouragement
I appreciate the encouragement and the suggestions. My wife and I beleive that we have turned the corner regarding future treatment - we found one trial that she is very encouraged about, and we have our first appointment (initial tests and admin) set up for February 1. Though she still has anxiety, it has greatly diminished now that a strategy is in place. I'm glad your husband is able to play "lead blocker" for you - I'm hoping that I play that position well for my wife, too. My best to your husband and your kids.

My very best,

M.

JR1949

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

Misdiag1Fauq

IL-2 the longest lasting Stg IV Melanoma treatment to date
If one is has a full response, 5-8% of general melanoma patients do, another 12-15% have a partial response. I had the partial response - stable for 20 months. UVA, Dr Weiss is a great Onc, with much IL-2 experience. He helped develop the protocols used for IL-2. His staff is very good and knowledgeable in treating the side-effects as they occur. One has a private room and are welcome to have a companion with them at all times. (Have a padded sleeping place in the room for the companion. I highly recommend Dr Weiss. The IL-2 delayed my tumor growth until Gleevec came along. Gleevec has again stabilized my tumors for the past 10 month, and I am still stable.
I would be very pissed at the Oncologist for the way you were treated. i researched on my own and found the Gleevec/C-kit information and talked Dr Weiss into trying it for me based on only one peer review paper having been published involving one patient!

GSK has a trial of their B_RAF drug which is not restricted to the V600E mutation. You may also want to look at MEK inhibitor drugs which are similar, but attack further down the melanoma pathway than the BRAF location.
I know one young lady that we had about given up hope on three months ago. She got on the GSK trial and after 10 weeks is now NED! (No Evidence of Disease.)

http://mpip.org/cgi-bin/mpip/dbforum.pl?db=main_bb&post=485573

Contact me if you would like more info.

NailBitingHusband

Misdiag1Fauq said:

IL-2 the longest lasting Stg IV Melanoma treatment to date
If one is has a full response, 5-8% of general melanoma patients do, another 12-15% have a partial response. I had the partial response - stable for 20 months. UVA, Dr Weiss is a great Onc, with much IL-2 experience. He helped develop the protocols used for IL-2. His staff is very good and knowledgeable in treating the side-effects as they occur. One has a private room and are welcome to have a companion with them at all times. (Have a padded sleeping place in the room for the companion. I highly recommend Dr Weiss. The IL-2 delayed my tumor growth until Gleevec came along. Gleevec has again stabilized my tumors for the past 10 month, and I am still stable.
I would be very pissed at the Oncologist for the way you were treated. i researched on my own and found the Gleevec/C-kit information and talked Dr Weiss into trying it for me based on only one peer review paper having been published involving one patient!

GSK has a trial of their B_RAF drug which is not restricted to the V600E mutation. You may also want to look at MEK inhibitor drugs which are similar, but attack further down the melanoma pathway than the BRAF location.
I know one young lady that we had about given up hope on three months ago. She got on the GSK trial and after 10 weeks is now NED! (No Evidence of Disease.)

http://mpip.org/cgi-bin/mpip/dbforum.pl?db=main_bb&post=485573

Contact me if you would like more info.

GSK B-RAF
Hey, I just followed your link. This confuses me, but I'm happy as hell for this girl! I'll follow up on this trial.

Thanks!

M

NailBitingHusband

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

Therapy Strategy
I'm so happy to hear that you have having success! And thank you for the suggestions and recommendations. I've heard many positive stories about IL2, and I have it down as one of the 3 different alternatives we are considering:

1. Immunotherapy - initially one's dealing with B-RAF gene mutation
2. IL2
3. Ipilimumab

Since my wife has still not received treatment, our initial targeted strategy is to pursue clinical trials for RO5185426 (formally known as PLX4032). Our most recent plan has again had to be scratched, but we do fly to LA tomorrow (we live in DC) to get tee'd up for treatment. We like this strategy because the side effects are minimal, plus the drug has had a 70% success rate during the clinical trials. The problem with it is that it's "durability" is only about 10 months. I've found the best info on melanoma, aside from this site, to be trade journals. As I understand it, this immunology strategy is based upon success of identifying the mutations that "drive" the cancer's growth. They ultimately want to create a cocktail of these drugs that will "block" several mutations - they believe that once the "driver" is sidelined by one drug, the cancer is smart enough to rotate another driver into place, and once that "driver" gets sidelined, it can rotate to another. By addressing each mutation they think they can eventually kill the cancer.

That said, though, this is going to take years. So if you can keep alive with IL2, IPI, and the other immunology drugs long enough......

Well, that's the theory, anyway. What bothers me is what I perceive to be the "competition" between methodologies and doctors. I keep reminding myself that these doctors are really clinicians, and they primarily see the patient as the "means" to a financial / celebrity status "ends". I keep thinking about the movie "The Fugitive" (Harrison Ford's version), where, at the end of the day, the villian is the good doctor's best pal - another physician who is so motivated by money and status that he would fudge the results of his clinical trial.

Good luck with the IL2, and my very best to your wife!

M

NailBitingHusband

Misdiag1Fauq said:

IL-2 the longest lasting Stg IV Melanoma treatment to date
If one is has a full response, 5-8% of general melanoma patients do, another 12-15% have a partial response. I had the partial response - stable for 20 months. UVA, Dr Weiss is a great Onc, with much IL-2 experience. He helped develop the protocols used for IL-2. His staff is very good and knowledgeable in treating the side-effects as they occur. One has a private room and are welcome to have a companion with them at all times. (Have a padded sleeping place in the room for the companion. I highly recommend Dr Weiss. The IL-2 delayed my tumor growth until Gleevec came along. Gleevec has again stabilized my tumors for the past 10 month, and I am still stable.
I would be very pissed at the Oncologist for the way you were treated. i researched on my own and found the Gleevec/C-kit information and talked Dr Weiss into trying it for me based on only one peer review paper having been published involving one patient!

GSK has a trial of their B_RAF drug which is not restricted to the V600E mutation. You may also want to look at MEK inhibitor drugs which are similar, but attack further down the melanoma pathway than the BRAF location.
I know one young lady that we had about given up hope on three months ago. She got on the GSK trial and after 10 weeks is now NED! (No Evidence of Disease.)

http://mpip.org/cgi-bin/mpip/dbforum.pl?db=main_bb&post=485573

Contact me if you would like more info.

Thanks for the Recommendation.
I'm happy to hear that you found a doctor you have confidence in - that, in my opinion, likely gives you a lot of strength. It's like you're a running back with a great lead blocker. We may look him up - but would Ho-Ville doctor welecome a former Hokie? I'm not so sure!

As I just posted in my previous post today, we're focused on IL2, other Immunotherapies, and Ipilimumab. I didn't say this before, but I'm also interested in the T-Cell strategy, but I have so much to learn about that. There's a really nice doctor at Hutchinson a friend of ours knows and who we've spoken with. He seem to be making some serious strides there, but that therapy is also offered closer to home - NIH and Hopkins.

I understand that a lot of drug firms are focusing on immunotherapy drugs focused on B-RAF, including GSK. I think the issue with them, though is that the other firms are not as far along as Roche is. They are launching their Phase I trials while Roche / Plexxikon have already done Phase I, Phase II and now Phase III. My wife is enrolling in the new Phase I that uses the same drug, but includes a cocktail to see what effect it has on metabolism. You did say something, though, that confused me - if GSK's drug is not targeting the V600E mutation people, then how is it targeted? I thought these types of drugs had to be customized/targeted for each person. The Plexxikon / Roche Phase I trial revealed that the B-RAF inhibitor didn't work on people without the mutation.

Anyway, I've read that new, promising treatments targeting N-RAS, c-kit, CDK4, p53, MITF,
GAB2, INK4A, CyclinD1, AKT, and PTEN mutations are being planned. If they can work out the kinks, a cocktail that block the dominant mutations likely to be the cancer's "driver" could be a shot at NED status (wow - I'm learning more lingo!).

Bottom line, though is that you're so fortunate to find a doctor to work with. Thus far we haven't. Amazing - we're on our own, figuring it out as we go. I've concluded that I'm officially "jaded" - that financial motivations overwhelm some doctors, making them forget their patients are humans.

Good luck with the IL2, and be greatful for your doc.

M

GinSue

NailBitingHusband said:

GSK B-RAF
Hey, I just followed your link. This confuses me, but I'm happy as hell for this girl! I'll follow up on this trial.

Thanks!

M

Phas II Roche Trial - I am B-RAF+ and on the trial
Hello there! I live in NC and have had previous therapies. You can read my blog about it if you like. Anyway, I started on the Phase II Roche trial at Texas Oncology in Dallas on November 19 2009. I haven't had any major organ involvement but it is in my lymph system and has spread to several lymph nodes throughout my body and surgery was not feasible any more. I also have in-transit disease - purplish/black spots on my skin near the areas where I have had lymph nodes removed. Since I started takeing the drug in November, I have had a 26% overall reduction in the size of my tumors. I have not had any new disease and my last scans (earlier this month) indicate continued shrinkage (though not as much this time) and I am stable. My in-transit disease has stopped spreading and has regressed in size also. This is visible to the naked eye. I certianly hope that anyone who is BRAF+ can get into a trial and get on this drug. All Phase II trial spots have just been filled as of January. I was diagnosed Stage III but because of the distant spread, I am now Stage IV. I have done the IL-2 and it worked for about 6 months but my cancer came back. IL-2 is very hard but it is doable and may dealy any further spread until you can find other options. I hope this has helped you but if I can be of further help, please let me know. ginellis@ec.rr.com

sadspouse

wish you and your wife the best.
My wife as gone done hill. she was dia. 5/2009 and after IL2, DTIC, and now the last thing she is going to try is CARBOPLATIN, and TAXOL. she had her first dose this past thursday and 2 pints of blood yesterday. today she seems just as weak and sick before getting blood. she has been turned down for trial studies because the trial study doctors say she is to weak and physicaly not strong enough to handle them. It has been very hard to watch her go through so much it is very rough, i have been home from work now 5 weeks and have been to every appt. her doctors has been busting his **** off, im glad we got him. through all of this i have learned one thing and that is at first ( I ) wanted to fight the cancer i was the one telling her to fight but i realized that she is the one going through the pain and missory and all i can do his stand by her help her around the house do what ever she needs and keep the doctor advised of everything. i am sorry if i am rambling but i have become very fustrated and sad for my wife she has gone throught alot and has had no good news on anything. She has told me that if the side affects get worse with this chemo that she wants to stop it and call hospis in. I will suport her no matter what she decides. So you stay strong cause it can get rough.

NailBitingHusband

GinSue said:

Phas II Roche Trial - I am B-RAF+ and on the trial
Hello there! I live in NC and have had previous therapies. You can read my blog about it if you like. Anyway, I started on the Phase II Roche trial at Texas Oncology in Dallas on November 19 2009. I haven't had any major organ involvement but it is in my lymph system and has spread to several lymph nodes throughout my body and surgery was not feasible any more. I also have in-transit disease - purplish/black spots on my skin near the areas where I have had lymph nodes removed. Since I started takeing the drug in November, I have had a 26% overall reduction in the size of my tumors. I have not had any new disease and my last scans (earlier this month) indicate continued shrinkage (though not as much this time) and I am stable. My in-transit disease has stopped spreading and has regressed in size also. This is visible to the naked eye. I certianly hope that anyone who is BRAF+ can get into a trial and get on this drug. All Phase II trial spots have just been filled as of January. I was diagnosed Stage III but because of the distant spread, I am now Stage IV. I have done the IL-2 and it worked for about 6 months but my cancer came back. IL-2 is very hard but it is doable and may dealy any further spread until you can find other options. I hope this has helped you but if I can be of further help, please let me know. ginellis@ec.rr.com

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

GinSue said:

Phas II Roche Trial - I am B-RAF+ and on the trial
Hello there! I live in NC and have had previous therapies. You can read my blog about it if you like. Anyway, I started on the Phase II Roche trial at Texas Oncology in Dallas on November 19 2009. I haven't had any major organ involvement but it is in my lymph system and has spread to several lymph nodes throughout my body and surgery was not feasible any more. I also have in-transit disease - purplish/black spots on my skin near the areas where I have had lymph nodes removed. Since I started takeing the drug in November, I have had a 26% overall reduction in the size of my tumors. I have not had any new disease and my last scans (earlier this month) indicate continued shrinkage (though not as much this time) and I am stable. My in-transit disease has stopped spreading and has regressed in size also. This is visible to the naked eye. I certianly hope that anyone who is BRAF+ can get into a trial and get on this drug. All Phase II trial spots have just been filled as of January. I was diagnosed Stage III but because of the distant spread, I am now Stage IV. I have done the IL-2 and it worked for about 6 months but my cancer came back. IL-2 is very hard but it is doable and may dealy any further spread until you can find other options. I hope this has helped you but if I can be of further help, please let me know. ginellis@ec.rr.com

.

.

NailBitingHusband

GinSue said:

Phas II Roche Trial - I am B-RAF+ and on the trial
Hello there! I live in NC and have had previous therapies. You can read my blog about it if you like. Anyway, I started on the Phase II Roche trial at Texas Oncology in Dallas on November 19 2009. I haven't had any major organ involvement but it is in my lymph system and has spread to several lymph nodes throughout my body and surgery was not feasible any more. I also have in-transit disease - purplish/black spots on my skin near the areas where I have had lymph nodes removed. Since I started takeing the drug in November, I have had a 26% overall reduction in the size of my tumors. I have not had any new disease and my last scans (earlier this month) indicate continued shrinkage (though not as much this time) and I am stable. My in-transit disease has stopped spreading and has regressed in size also. This is visible to the naked eye. I certianly hope that anyone who is BRAF+ can get into a trial and get on this drug. All Phase II trial spots have just been filled as of January. I was diagnosed Stage III but because of the distant spread, I am now Stage IV. I have done the IL-2 and it worked for about 6 months but my cancer came back. IL-2 is very hard but it is doable and may dealy any further spread until you can find other options. I hope this has helped you but if I can be of further help, please let me know. ginellis@ec.rr.com

.

.

NailBitingHusband

GinSue said:

Phas II Roche Trial - I am B-RAF+ and on the trial
Hello there! I live in NC and have had previous therapies. You can read my blog about it if you like. Anyway, I started on the Phase II Roche trial at Texas Oncology in Dallas on November 19 2009. I haven't had any major organ involvement but it is in my lymph system and has spread to several lymph nodes throughout my body and surgery was not feasible any more. I also have in-transit disease - purplish/black spots on my skin near the areas where I have had lymph nodes removed. Since I started takeing the drug in November, I have had a 26% overall reduction in the size of my tumors. I have not had any new disease and my last scans (earlier this month) indicate continued shrinkage (though not as much this time) and I am stable. My in-transit disease has stopped spreading and has regressed in size also. This is visible to the naked eye. I certianly hope that anyone who is BRAF+ can get into a trial and get on this drug. All Phase II trial spots have just been filled as of January. I was diagnosed Stage III but because of the distant spread, I am now Stage IV. I have done the IL-2 and it worked for about 6 months but my cancer came back. IL-2 is very hard but it is doable and may dealy any further spread until you can find other options. I hope this has helped you but if I can be of further help, please let me know. ginellis@ec.rr.com

.

.