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New Stage IV Metastasizing Melanoma Husband

NailBitingHusband
Posts: 23
Joined: Jan 2010

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
Posts: 4
Joined: Jan 2010

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.

NailBitingHusband
Posts: 23
Joined: Jan 2010

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

SRHadden
Posts: 4
Joined: Jan 2010

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
Posts: 41
Joined: Dec 2009

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
Posts: 23
Joined: Jan 2010

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
Posts: 41
Joined: Dec 2009

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...

NailBitingHusband
Posts: 23
Joined: Jan 2010

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

CancerWarrior1960
Posts: 2
Joined: Jan 2010

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
Posts: 23
Joined: Jan 2010

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
Posts: 230
Joined: Jun 2009

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

NailBitingHusband
Posts: 23
Joined: Jan 2010

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

ida123
Posts: 3
Joined: Jul 2010

Hi
Im a 37yrs old from Ireland im now stage IV met mil melanoma. first operation was in 2004 removal of freckle on my shoulder then it came back im my lung which was removed in 2009, back again in adrenal gland and ovary, they were removed in nov 2010 back adain in neck and other ovary in jan 2011, I was on interferon for 9 months before it camce back in gland and ovary, Ive had radiation on my neck because surgery is no longer an option, my proff has given me 6 months to live but is also putting me on ipilmumab stating next tues.. do you have any experince of this drug??

Thanks
Shirley

morpro
Posts: 1
Joined: Feb 2011

I am almost done with my "ipi" treatment. Started December 2010. My melanoma started as a mole on my knee in 2005. Came back in 2006 in the groin lumph nodes, returned again in 2008 in my brain and again in 2010 in my liver and spine. The treatment seems to be going well. I have itchy skin in the evenings and that's it.
It didn't start out so great though. I had an emergency craniotomy and surgery on my coccyx to remove a benign tumor. That's when they found the melanoma had traveled to my liver and spine/bone. I have great doctors that have been with me from the beginning. They recommended the ippilimumab and blood tests are showing good results so far! I have a four year old and am staying positive and LOVE feeling great after a month and a half down.

jenwms78's picture
jenwms78
Posts: 2
Joined: Mar 2010

My name is Jennifer Williams I'm a 32yr old mother of four, was diagnos
with Malignant Mellanoma also stage 4. Just wanted you to know reading your
story gives me a lot of more hope and comfort. thank you for sharing. I have surgery on the 8th of april at Vanderbilt and will know the treatment plan after that. wishing wellness and a good healthy life.

NailBitingHusband
Posts: 23
Joined: Jan 2010

Jennifer,

I assume you are seeing Dr. Sosman there at Vanderbilt - I've heard some very nice things about him, and my wife almost pulled the trigger on seeking treatment at Vanderbilt, but decided that UCLA was a better fit for her. Keep your chin up and be as positive as you can!

My best to your family.

Mike

katd1954's picture
katd1954
Posts: 6
Joined: May 2010

Since your surgery on April 8th I would like an update to see what they discovered and what treatment you have decided to take.
I am starting my chemo Monday and just want to be able to talk with other that are going through the same thing.
I keep telling myself that God is in control!
I hope both of us have a good, long healthy life.

Misdiag1Fauq
Posts: 5
Joined: Mar 2007

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
Posts: 23
Joined: Jan 2010

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

NailBitingHusband
Posts: 23
Joined: Jan 2010

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

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

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
Posts: 23
Joined: Jan 2010

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

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

Hey Mike! Thanks for the update on you and your wife. I was a little worried since it had been a while since your last post. I appreciate your info on the steps you are taking next. I will check into that as well. I am glad you went with the Phase 1 trial and definitely got on the drug. I'm pleased to know they are testing it with other meds since there is a page full of meds I can not take while in the trial. Please give your wife a big hug from me and tell her to stay positive and accept all the support she can get from family and friends. It has a done a world of good for me! And it sounds like she has an excellent caregiver as well. You are to be commended! I promise to keep in touch and ask you to do the same. I would like to know how your wife progresses on the trial. It is certainly a very promising drug.

Keep the good news coming!

Ginger

NailBitingHusband
Posts: 23
Joined: Jan 2010

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NailBitingHusband
Posts: 23
Joined: Jan 2010

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NailBitingHusband
Posts: 23
Joined: Jan 2010

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sadspouse
Posts: 8
Joined: Feb 2010

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 ass 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
Posts: 23
Joined: Jan 2010

Listen - you've got to keep your spirits up, because it's the main thing you can do for your wife right now. I'm sure its tough as hell, but it's the most important thing you can do right now. I'm so sorry I haven't returned your message till now, but my wife started a clinical trial last week in LA (we live in Washington DC) and we just got back yesterday. If you have the time, try reading the 3 part series of articles that were on the front page of the NY Times last week:

h​ttp://www.n​ytimes.com/​2010/02/22/​health/rese​arch/22tria​l.html

http​://www.nyti​mes.com/201​0/02/23/hea​lth/researc​h/23trial.h​tml

http://www.​nytimes.com​/2010/02/24​/health/res​earch/24tri​al.html?hp

They are about the clinical trial drug my wife is now on, and you will see that one guy on this drug had his life prolonged by one year, and he started it when he had just days left to live.

I'm sorry this is taking such a toll on your wife, but on you, too. I'm in your same situation. I have neglected my job and focused almost 100% on my wife and her condition, and haven't missed any of her doctor appointments, tests, or treatments. What else can we do?

I see myself in your words - try and stay positive. Best of luck to you. Feel free to contact me anytime.

Mike
michael.c.stratos@gmail.com

NailBitingHusband
Posts: 23
Joined: Jan 2010

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

sfrey
Posts: 7
Joined: Mar 2010

Hi,

I just read your posts. My brother in law was diagnosed with stage 4 melanoma Nov 2009, it is on his spine, sternum, pelvis, liver. He recently did the interleukin in Jan2010, but just reviewed the scans last week, and there were more tumors...so treatment did not work. He has now started chemo with Taxol and Carboplatin (1 dose completed), so we are awaiting to see if this will affect the cancer.
In the meantime I am reading these article of the Dr Flaherty in Pennsylvania for the PLX drug. His oncologist told him he could have his gene tested but would take a month or longer to send out of state....seems like everything takes time. I agree with you that you should have your gene tested so your Dr is not guessing with your treatment and can focus on what may work for your type.
I am trying to be proactive and research for him, but my sister does not take my advice as I want...she says that the dr knows what he is doing and they are at the best place. (I was not telling them to travel states, but just to be open to searching over peoples stories and what their course of action is/was).
I am frustrated as I am only trying to help, but sometimes my advice is not always heard.
If you would like to offer any thoughts/suggestions I am always open.
Thanks for reading (1st time to post on this site).
Sarah~

NailBitingHusband
Posts: 23
Joined: Jan 2010

Cheryl has it in her lung, a lung lymph node, 2 places in the liver & a liver lymph node. She too was diagnosed Nov 09, and though they can't find cancer in her uterus, they found cancer cell there and in her right breast. Cheryl is 45, and no external "primary" was ever detected. They're speculating it originated in her lung.

Anyway, she started PLX4032 (now called RO5185426) on Feb 28. It took 2 weeks to confirm that she had the B-Raf gene mutation and (this is new) the right liver DNA (10% don't). Roche has to confirm results using their own labs. This study required her to be on cocktail of drugs for another 6 days too before she started PLX. Add in the initial doc appointment, lag and travel - that's an additional 1-2 weeks on top of the above referenced tests.

Up until yesterday the only side affect were some headaches, but yesterday she broke out in a bad rash all over her body. The rash caused tenderness and itching too, plus fatigue and other flu like symptoms. She is feeling better today though still has the rash. Doctor said the rash commonly starts between days 10 & 30. Joint pain, too. Spoke with a woman taking the drug in Dallas these last 4.5 months ans she has had a milder rash almost the entire time. Our doc says the rash is evidence the drug is working. Doc has also said some people get thinning hair, but she's not seen that.

I'm aware of several sites testing the drug : NYC, Boston, Dallas, Nashville, Philly, & LA. Though we live in DC, she is in the LA trial. There are now only Phase ii and Phase iii trials out there. Go to www.clinicaltrials.gov to check for locations best for you. Your brother in law should focus on the Phase ii because he will 100% get the drug (and its specifically for people who have tried and failed other treatments). Anyway, lead in time no big deal because previously treated people need to wait 30 days without mess before they can start anyway.

I heard that Ippilumimab is re-entering mkt. Very promising/was most promising before PLX made its splash. You should check into that, too.

Georgie Arnold
Posts: 3
Joined: Jun 2010

My husband was in the same trial and developed the same rash. In fact, it was so sever they put him on "vacation" for a week. Th etrial did not work for him. So muchfor it being
asign of working. He is now waiting for the Ipi program, but need to be off trial meds for 28days. he is having regular bouts of illness including a burning stomach, dry heaves, vomiting, mostly liquid the same color as his pills (mustard). He also has a dry, hacking cough. Has your wife experience anything like this? Has any one you know of?

JR1949
Posts: 230
Joined: Jun 2009

I'm sorry that I have not got back to you. My last post to you was in January, I have thought about you and I have prayed for all of my friends on this cancer survivors network.
Like you said, you have to keep positive and I know sometimes that's hard to do.

I told you that my wife was scheduled to go back to the hospital in February but it was postponed. Her doctor wanted to have another PET scan and CT scan since last CT scan was done December 29. So they did a PET and CT scan March 5 and we got the results Monday. Praise God, the scans showed that the tumors were gone!!!

I wish the best of luck for your wife. I believe in the power of prayer....we had friends and family praying for us. I will pray for your wife's recovery.

JR1949

NailBitingHusband
Posts: 23
Joined: Jan 2010

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
Posts: 1
Joined: Mar 2010

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.

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

I am glad to hear such promising news from everyone in the last few posts!

My husband and I are leaving for Dallas, Texas tomorrow for my 6 week scans. Please pray that all continues to be at least stable for me although I am certainly praying for more shrinkage of the existing tumors! It continues to be a scary time especially when scan visits roll around!

This drug is providing a new ray of hope where none really existed as little as a year or two ago. I feel so blessed to be able to take part in such a miraculous study and receive the benefit of an extended life expectancy!

I am 43 and was diagnosed Stage IIIC in September 2007 - a mole that changed on top of my foot. Although it has not spread to any major organs or to my brain, the distance of the spread has moved me to Stage IV.

Many blessings to all of you and as stated earlier, please don't hesitate to contact me. If sharing my experiences with any of you will help, I want to be there for you!

ginellis@ec.rr.com

lkoepplin
Posts: 1
Joined: Mar 2010

I am newly diagnosed 34 year old woman, stage IV metastatic melanoma.

I was first diagnosed with melanoma in Nov 2007. My mole was colorless, .95 mm thick with a Clark level 4. After a wide excision removal w/sentinel node biopsy they did a PET scan and said I was clear. For the first year I went for 3 mo checkups, after that every 6 mos. I AM EXTREMELY VIGILANT and aware of my skin, as I have been getting basal cell/squamous cell carcinoma's since my early 20's.

Last month (FEB 2010) I found numerous nodules in several places of my body, a swollen lymph node as well as a lump in my right breast. These all came about over the span of one week. I got into the doctor immediately. They did a core biopsy of my breast and found melanoma, then verified the nodules (tumors) were also melanoma. After doing my CT/PET scan, I went in for the results of the report. The report stated that I had "hot spots" on both femurs, hip, ribcage, spine, liver and lung. My local doctors got me an appt with UCSF that following week. Last week I saw Dr. Daud and Dr. Algazi (love them both) who went over the actual PET images with my family and I, to see that the report was VERY inaccurate. I have one area in my spine, something on my lung which they think might be a lymph node and multiple nodules/tumors (not ulcerated)on my skin. They tested me for the BRAF gene and I should receive the results next tuesday.

Once I know my results of the BRAF test, we will decide on a plan of attack.

I am scared to death. My husband is scared, but totally my ROCK. We have both lost mothers to cancer (lymphoma and myeloma)and will do whatever it takes. Waiting is hard, so we try to be proactive by doing research. I search high and low for the good news, whilst sifting through the grim.

My heart is with you ALL. I now feel like I have found others in the same boat, on the same road......whatever.

I will be checking/updating this forum frequently. Please feel free to message me for ANYTHING.

Laura

nicmarie75
Posts: 54
Joined: Apr 2010

I know someone meeting with UCSF today and their story is similiar to yours...

Sending Hugs your way!

notcopingwell
Posts: 1
Joined: Mar 2010

On the 3rd of this month my husband was having problems with his left arm and leg. I took him to the emergency room where they did a ct scan and found an orange sized tumor in his brain. He was sent home with an appointment for an mri the next day. After his mri he was admitted to the hospital. By the end of the day he was paralyzed on his left side. On the 8th the neurosurgeon was able to remove all of the tumor. Most of his left thumb was also removed (it had a chronic wound in the nail bed). Pathology reported the tumor in his brain was melanoma that originated in his thumb. Two days after the tumor was removed he started getting feeling back in his left side. He is able to walk now but his vision is blurry and has double vision. They did another ct scan and there maybe some melanoma in the lymph nodes near his lungs. He just started radiation yesterday. We are still kinda left in the dark about what the next step is. We see an oncologist next week that deals with chemo. Can someone give me a clue of what my husband's and my future will be like for the next few weeks/months?

ScotsIrishSurvivor's picture
ScotsIrishSurvivor
Posts: 6
Joined: Mar 2010

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.

JR1949
Posts: 230
Joined: Jun 2009

I will be praying for you and offer any support I can.
Have you talked to the hospital about financial help or a payment plan? My heart goes out to you. I know it's hard to do but try to stay positive and pray. I know prayers are answered. I had prostate cancer last year and am cancer free now and my wife had stage 4 melanoma June 2009 and March 5, 2010 PET and CT scans showed no hot spots and cancer free.
Feel free to see my story on My CSN space by clicking on the blue box with JR1949.

NailBitingHusband
Posts: 23
Joined: Jan 2010

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%3d-VJgOelWdve4%3d

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.

ScotsIrishSurvivor's picture
ScotsIrishSurvivor
Posts: 6
Joined: Mar 2010

Thanks for the above links and emotional support! I've been in contact with the local ACS and also, we are still currently on a self pay status. Very difficult with one income that can be seasonal.
I was informed this week (after petscan) that the melanoma has metastasized to my lymphnodes and liver... tentative surgeries and chemo/radiation to follow in the next few weeks.
Any advice and support is greatly appreciated. I'm determined to fight this thing, even with the financial difficulties slowing the process!
Hoping that this 'group' declines in numbers on diagnosis but NOT survivors!
My prayers to all, fighting and supporting!

NailBitingHusband
Posts: 23
Joined: Jan 2010

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

surface1969
Posts: 1
Joined: Apr 2010

I have just joined and spent the last few minutes reading through the posts and am curious why none of you have tried Interleukin 2? I was diagnosed with melanoma in 2003 and it eventually with to my spine and lungs. My oncologist immediately sent me to The National Institutes of Health in Bethesda, MD. I began the IL2 treatments and they worked on me... thank GOD!! I'm cancer free today (or NED - no evidence of disease). So, I'm just curious if any of you looked in to this treatment.

Thanks!

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

I have gone thru several surgeries and therapies. Here is my list from the beginning:

1) Wide Margin Excision w/skin graft on right foot and Sentinel Lymph Node - Sept 2007
2) Superficial and deep lymph node removal right groin (2 separate surgeries)- Oct 2007
3) Interferon - Dec 2007 thru Jan 2008 (did not do home inj. on Dr. advice)
4) Isolated Limb Infusion due to development of in-transit disease right thigh (considered recurrence) - May 2008
5) Interleukin 2 (IL-2) - June 2008 thru Feb 2009
6) Lymph nodes removed under right arm due to recurrence found in June 2009 - July 2009
7) In-transit disease right breast, new activity with right groin in-transit, multiple internal tumors found on PET (surgery not reommended due to number of tumors and new activity) however, no major organ involvement - Sept 2009
8) Participation in Roche BRAF trial Dallas TX - Nov 2009 to present

I have to say that I believe that my in-transit disease is the culprit in my case. The limb infusion, which was a lethal amount of chemo, could not reach all the tumors which had spread from my groin to my hip and buttocks area. This technique uses a turniquet to isolate the treated area which prevents the chemo from reaching organs. You can google it if you have more questions. I know IL-2 has worked for many people and in my case, it did delay recurrence for about 6 months. If it is an option for anyone, I do encourage this treatment. It is very very rigorous but is doable and worth the effort!

Ginger
ginellis@ec.rr.com

sbillinghurst
Posts: 3
Joined: Apr 2010

I mentioned to the oncologist that I had had a diagnosis of schizophrenia before, and I could not make him understand that I had adequate mental health. He seems to have convinced himself that IL-2 will give me hallucinations, and he would have to take me off again. It's hard for many people to complete anyway, but it seems like the best. It's the only one approved by FDA. I may have to start over with someone else who can administer IL-2, and try to appeal to their common sense. When you aren't psychotic, you aren't "closer" to being psychotic than other people. All this psych trouble dates back forty years, basically from using illegal drugs, and I don't do that. Forty years is a pretty good survival rate, amirite?

This thing started with a swelling in my armpit in March, but it must be metastatic from a skin lesion from five years ago. They missed a cell, it missed the local lymph nodes, it stayed restrained, and then became reactivated, is my theory. I would like to sue Kaiser for malpractice.

My current doctor is Gregory Daniels at the Moores Cancer Center, UCSD. All this is in San Diego. I have been asked if I wanted to drive to UCLA for that PLX4032. My first oncologist is Dr. Robert Barone at Sharp. I can see that these posts are still current to all the same therapies at least.

ScotsIrishSurvivor's picture
ScotsIrishSurvivor
Posts: 6
Joined: Mar 2010

We have been told that IL-2 is my remaining option now.
Hoping all goes well with the consultation and I am healthy enough to take the treatments.
I've known about these tumors since February. It's nearly June.
If this had happened less than a year ago, I'd be insured and possibly have half a chance at being treated in a timely manner instead of being forced to take a number and wait.
Can't wait much longer.

beaver1
Posts: 7
Joined: Apr 2010

Im not sure if you will see this or not. I Certainly hope that your doing well and the IL-2 has given you a complete recovery.

I have been offered IL-2 for my Malinoma just a week ago. Was wondering how the effects of it are or were.

I pray that you are having a full recovery with no side effects to the mediations.

Thank you for any information

Kelly7
Posts: 4
Joined: Jan 2012

Can you please let me know if you went with the IL2 treatment, how it went, and how you are doing? My brother goes in next week and I am so nervous....

Thank you

sfrey
Posts: 7
Joined: Mar 2010

Well you are one of the lucky ones, and great to hear!
My brother in law was diagnosed with disease Dec 2009. Did IL-2 treatments, they did not work. Has had 3 rounds of Chemo with carboplatin/Taxol, also did not work. Growing up his spine closer to neck area where nerve endings are, also bad tumor in his hip spread to muscle. receiving radition daily for 2 weeks now to try to alleviate pain. Next step is to meet with a phase 1 trial dr to discuss further options, but won't be able to start a new treatment for probably a month...so frustrating as it is constantly a race against time! But so much waiting and waiting. I pray that something will work and work fast!
He is being treated at Karmanos in Detroit, MI.
Does anyone else know of any more drug options, alternative treatments?

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