Topic: MEK/Pazopanib

We certainly do forge ahead on this path as intrepid travelers.  After a couple of chemo protocols to treat a recurrence three years post resection, and having weighed many options and consulted with five docs, I have enrolled in the MEK/Pazopanib trial (that Holly mentioned).  I first went to Hopkins to see Dr. Azad, but they lost an important staff person to an unforeseen leave and have not been able to enroll anyone so far.  She referred me to Drs. Shroff and Zinner at MDAnderson in Houston and we made the schlep there a week ago.  The medical center is impressive; the city oppressive.

Despite some initial trepidations about timing, they were able to get all the testing done within those five days and start me on the trial as of Tuesday 9/23.  So far, so good.  Some fatigue is hitting, along with hypersensitive skin on my face.

Both meds have been FDA approved individually for other cancers, but not in combination.  The Phase I part of the trial included all solid tumors and has been going on for two years with good success.  It was due to the surprisingly good response of two cholangio patients that the researchers won a grant to add 25 cholangio patients to the trial.  I think it is not officially Phase II, but the dose has been established and side effects logged for two years.

I'd love to know if anyone else on here is enrolled.  I'd be glad to chat with anyone considering it.

Re: MEK/Pazopanib

Trial update:

After a false attempt at J Hopkins due to an inadvertently departing clinical team member, I was accepted for the same trial at MDAnderson.  I think they may be transferring me back up to Hopkins on my request, since I live in NYC.

I have been on the trial for 18 days now.  Side effects, as expected, have been sleepiness, an acne rash (not too attractive), and diarrhea.  Caffeine, topical Clindamycin and Immodium have been my friends.  I may have to start the oral antibiotic for the acne, as it probably won't let up as long as I'm on these meds.

Meanwhile, my blood work looks really good, including most liver enzymes (ALT, Alk Phos)(AST went up a bit), except platelets, which have surprisingly gone down to 68 (this is not quite expected).  AND, CA19-9 has gone down to 83 from 109!!  I'm not sure how that's possible in two weeks, so I'm not putting too much stock in its significance.

This seems to be a very promising regimen, according to results seen in the (small number) of cholangio patients treated.

If anyone wants to discuss, please contact me.

Cheers,
Regina

Re: MEK/Pazopanib

Hi Regina, all in all I would say its looking good, looking good! Hope you get that transfer back to your area. As for the Acne just tell people you are really 16! Please keep us posted, I know you will and keep up the reports on your progress. I think you deserve a big YIPPEE!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: MEK/Pazopanib

Thanks, Lainy~  You are always so supportive!  Yes, in fact, I'm buying clothes in stores my teenage daughter frequents to go with it.  @@/

Re: MEK/Pazopanib

Ha, Ha Regina, I could probably get one leg in one of those skirts! Sure different than the "poodle" skirts I wore in the 50's. But then so is everything different. I remember my parents objecting to Elvis. I still don't think he left the building!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: MEK/Pazopanib

I posted in the other section, but let me repeat... Great news to hear! I hope you get to transfer back to NY soon. We can start an "acne" club!! lol
Please keep us updated on the trial as so many of us follow these posts! Any new trials are of a lot of interest to me!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: MEK/Pazopanib

Hi Regina,

That is good news!!!  I hope the Clindomycin helps with the acne and the Immodium with diarrhea.  I also hope you get moved to Hopkins since it is so much closer to home for you. 

I'm not eligible for a lot of trials because of previous chemos I've had.  But I talked to my doctor today about a trial at General Mass that looks good for me.  I'm currently being treated at Memorial Sloan Kettering and am being treated with Paclitaxel.  It is keeping the tumors stable as of last CT scan on 9/4 which is good news but also means I can't go on a clinical trial because of that.  My next scan will be the first week in December and if there is any tumor growth or new tumors, I would be eligible for a clinical trial.  Sloan has a number of trials in Phase I right now with inhibitors that I could be eligible for.  My doctor said I could also be eligible for the Phase II trial at General Mass - Cabozantinib.  One problem for me might be that I've had more than two different chemo regimens.  The study says for patients with progression on first or second line systemic therapy.  But my doctor said there may be ways to work around that.  She would be willing to call the doctor in charge of this trial at General Mass to see if I could be eligible if my December CT scan shows tumor growth or new tumors.

Please continue to update us on your progress.  It's so nice to hear from you and Kris (also doing well on a clinical trial) on your great progress with your clinical trials.  It gives me hope for the future with this horrible disease.

Thank you for sharing.

Peace & Love,
Mary

Re: MEK/Pazopanib

Lainy~  My daughter's taste has always been sophisticated to my Bohemian look, but guess what?  The tastes are shifting to Bohemian and she's borrowing my clothes now!  And I shop in her stores -- the sale rack in Free People granted me three nice tops last week during my "retail therapy" session that immediately followed an important workshop during I was embarrassingly chemo "brain-limp!"

Re: MEK/Pazopanib

Regina, I used to be more blingy, now more subdued and my Robin (51) has become the Queen of Bling! I get a kick out of all the girls wanting vintage now. Teddy's Granddaughter is getting married next June and it will be a total vintage wedding. This next weekend I will be in Palm Springs for an engagement party her Mom is giving. I am giving Dani 2 gorgeous pair of vintage earrings hoping she wears 1 pair for her Wedding. On and Teddy's daughter gave me the job of watching for Teddy to see if he comes. I have already been told I get the Great Grandson for 2 days, he is 22 months and a mini Teddy! It is unbelievable! Makes me believe in reincarnation too!  Anyway I am going to hate those 2 jobs. Yeah right!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: MEK/Pazopanib

Dear Mary~

As I shared in another section, I was actually referred to the cabo trial by my excellent Mass Genl doc, Eunice Kwak; however, when I looked it up I saw that it had been approved for several other cancers; so I called my insurance company and they said they would cover it!  So you can do it off trial.  My Columbia Pres doc, Abby Siegel,  (also wonderful) said she'd be glad to put me on it if I wanted.  We agreed to save that one for when I may not be eligible for a trial.

I also see a superb doc at Sloane, Eileen O'Reilly, who suggested that I consider the Taxanes at some point.  I'm really glad to hear that Paclitaxel is keeping the tumors stable.  Who do you see at Sloan?

I'm pretty sure the DTP (Phase I department) at Sloan requires that you be off other treatments for four weeks before they'll even meet with you.  I met with Dr. Drobin, whom I really liked, there before starting this trial and he said that there would be some trials opening up soon.  It's all a matter of timing with Phase 1 trials.  It's good to be on their radar.  In fact, I am glad to be on the radar of five excellent docs are great medical centers, as they update me regular if there's an opening.

I was also offered a go at a trial at Mass General with Dr. Kenneth Tanabe, an extremely well-respected and kind doc, in immunotherapy, using the Herpes virus to attach to ones own immune cells and reinject into the liver.  Though I find this type of therapy very promising, it not been tried extensively as MEK and Pazo had.  I might head back that way later.

There is a lot that can be done; just reach out with many feelers.  BTW, I'm not sure at all yet that this regimen is working for me, but I will keep you posted, especially after CTs, etc. in November.

Peace and hope,
Regina

Re: MEK/Pazopanib

Regina,

I see Dr. Maeve Lowery.  She is in Dr. O'Reilly's group.  I am very happy with her.  She is attentive and open to all conversations, gives me the time I need to discuss everything and anything on my mind.  She is also up on all the trials and and happily discusses them with me.  She's always thinking of next steps and keeps me informed.

I was aware of having to be off current treatment for four weeks before starting the clinical trial.  Most trials require that but Dr. Lowery didn't see that as a big issue for the Sloan Phase I trials or the General Mass trial.  My main issue, for the General Mass trial, is that I've been on more that two chemo regimens, but as I said she said we may be able to work around that.

My insurance would probably pay for the clinical trial because I would go into it because current treatment stopped working.  But Dr. Lowery said they may not pay for the biopsy for the next generation gene sequence.  If I get that done, we'll check with them first to see what they say and then go from there.  I'm not going to let an insurance company decide my fate.  So if it's something my doctor thinks strongly I should do, I will work something out with or without the insurance company.

I agree with you, it is good to discuss these things with your doctor and be on their radar.  We have to be our own advocate and that is why this website is so important.  I have gathered so much info thanks to the moderators and all the people, like you, that kindly share there stories here.  I want to pay it forward and also share my treatment plans and possible options in hope of helping others.

Stay strong Regina and I will pray and send positive vibes your way for this trial to work for you.  Thanks again for sharing your story.

Peace, Love & Hope.

Re: MEK/Pazopanib

Hi Mary~

Just to make sure you understood:  My insurance agreed to cover cabozantinib OFF-trial.  That means you would use it with only the supervision of your onc, without all the restrictions and requirements of a trial, including the four week clearance time.

Also, I had my genetic analysis done at Foundation Medicine, and I don't think they wound up charging me much at al, if anything.  They want patients now more than they want the revenue from them.  Also, MDAnderson, for example, would do it as part of their protocol, hassle-free.  Some of the big medical centers have their own genetic labs that can check for all the mutations. 

Out of 236 genes tested, I only had a mutation on IDH2.  There is as yet not enough information as to what to do this information, in most cases, but it's coming along.
Be well!
~Regina

13 (edited by Regina Fri, 11 Oct 2013 21:10:02)

Re: MEK/Pazopanib

HI Kris~

Yes, we must meet up soon.  DId you tell me you are in NY, as I am?  I can't remember which platform we used to communicate previously.

How's your face these days?  Mine is approaching monstrous, frankly.  The trial nurse said I could start an oral antibiotic for the long term, but I'm a bit nervous about dilapidating my natural flora, affecting digestion, immune system, etc.

Why do these inhibitors cause acne???  I was hoping that if I was going to die young, at least I would die beautiful!

Sigh.
best to you!
Regina

Re: MEK/Pazopanib

OMG, Regina, sorry to intrude but you just cracked me up! Now I can go to bed with a smile because of your wonderful sense of humor! Glad to see there is another "nut" on here beside me! I do hope you and Kris can get together. She is a nut too! All good ones.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: MEK/Pazopanib

Regina....A recent study of Cetuximab (Erbitux) showed that those patients who developed an acne-like rash responded better to the treatment than those who did not. Eributux, a monoclonal antibody disrupts the epidermal growth factor EGFR which is found on the surface of some cells.  Basically, Erbitux interferes with the growth of the cells by attaching to it.
Other EFGR inhibitors also cause an acne-like rash however, as far as I know, we don't have any answers as to why this is happening. 
In this case, I like to believe that your acne and that of Kris is related to a positive response of the treatments.  Studies will have to prove it however; I stick to my very own reasoning. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: MEK/Pazopanib

Thanks, Lainy~

You keep me smiling, too.  The best defense is laughter!  Glad to know you're up for some gallows humor, because I have been holding back on this platform, feeling out the waters with one (oxali-numbed) toe at a time.

keep having fun!
~Regina

Re: MEK/Pazopanib

Hi Marion~ 

My onc told me about that interesting phenomenon with Erbitux; and I queried her as to whether it applied to MEK/Pazopanib, too, but she said it wasn't yet known.  I guess Kris and I will be among the numbers to inform future queriers.

Thank you for the interesting information you did provide.  I appreciate having some information to wrap my head around.  In fact, it stands to reason (maybe) that if the drugs are disrupting cell growth signaling such as to have a visible effect after only two weeks, it is possible that my already lowered CA19-9 could represent actual tumor growth remission.

One might as well entertain the possibility, anyway.

Hugs to you,
~Regina

Re: MEK/Pazopanib

Regina, you are cracking me up!! I also can get morbid. My favorite, when I know I'm eating something bad is "what's it gonna do? Kill me?" Or "if it's gonna give me cancer, too late! Already got that!" And as far as dating, I say if they want a long term relationship I'm a bad bet.
Seriously, tho, I believe CA19-9 falling represents less activity. Meaning shrinkage or stabilization.
Most of my "eruptions" are at the hairline or in the scalp. I do get occasional wanderers on my face. But it's not too bad, so I guess I'm lucky. Mostly I can cover up with concealer. But with my hair falling out, I'm worrying about going bald. So I had a little talk with God the other day. Just to clear the air. I said I would totally rock the baldness if it came to that, but not with acne head. So he either has to let me keep my hair or he has to stop with this acne-like head! I'm hoping he listens!! lol
So far, I'm getting thinning hair. I'm hoping it stops at that. The trouble is, these drugs are so new no one really knows long term side effects. Unfortunately, the acne like eruptions seem to be fairly common, according to my onc.
But I like the theory that we are responding better! And I can say I am: 4mm shrinkage is not bad!! I will celebrate that, since I'm supposed to be holding steady on this drug!
Oh, and I live outside of Philadelphia, PA. But I could probably be talked into a day in NYC. I've never seen the tree lit up!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: MEK/Pazopanib

Hi Regina,

Yes I understood what you were saying.  That would be nice if Sloan would pay for my genetic testing if my insurance wouldn't.  That was the one thing my doctor mentioned about the possibility of my insurance not paying.  She didn't see the clinical trial as a problem regarding payment from my insurance.  As you mentioned, and so did my doctor, that sometimes if you get in a clinical trial they may want to do the gene testing and therefore might pay for it.  That would be great!!!

There are always some side effects to all drugs, but why do we have to endure acne at our age!!!

Re: MEK/Pazopanib

Not sure why the rest of my post is missing.  It was a very long post but only half of it posted.

If can't remember all of it bit two important items...

Regina, regarding your sense of humor - I love it having my own Irish black humor!  Humor has gotten me through a lot of heartache in my life. 

Kris, in regards to the acne head and hair thinning...I started using a shampoo and conditioner called Nioxin.  It's a hair thinning shampoo but my daughter read it was good for acne/ sores on the scalp.  I decided to try it since I was having issues with scalp sores after my Paclitaxel treatments.  I don't know if it's a coincidence or not but my hair started growing back.  I don't know if you remember, but when you met me I had lost a lot of my hair.  I lost a lot more after that and I swear my hair is growing back since using this shampoo.  I bought it in a store called Ulta.  Not sure if it's in your area.  It's also online but my daughter read it wasn't good to buy online.  Sorry chemo brain so I can't remember the reasoning behind that.  If you want to try it, and have trouble finding it in your area,I can certainly buy it and mail it to you.

There was more on my post that wasn't posted above but that's all I can remember.

Be well ladies, stay strong!!!  Once again thank you for sharing your stories regarding your clinical trials.  I hope to see many more good news posts from the both of you!!!

Take care,
Mary

Re: MEK/Pazopanib

Mary~
Just a quick response now since I have to dash~  sorry to hammer the point, but what I was saying about the cabo is that you don't have to be on a trial at all.  Your doc can prescribe it for you like any other medication.  Being on a Phase 1 trial is a pain in the neck with all the excess testing and reporting -- only worth it if it's your only option.  Cabozantinib can be prescribed like a regular medicine and paid for by insurance by your doc and you're on your merry way.


have a great day~
Regina

Re: MEK/Pazopanib

Kris~

hah!  Yeah, well, I'll wear a seat belt on the way to the beach, but I'm not too worried about the sunscreen.  (Except, I can't really use that anymore since the sun brings out the acne!)  Ultimately, it's all about vanity.

I agree, your scalp issue should really be only one or the other.  definitely protest. Although, once you're wearing a wig, what's the difference what you're covering up?  Have you tried that route?  I would love to write a story about my wig adventures.  I have gotten used to switching hairstyles and color on a regular basis.  The trouble is that I try to stay consistent with professional crowds, and I blew it last time -- showed up as a redhead where once I had been blonde -- and no one recognized me.  It may have been a good thing because my brain was full of cotton balls and I had nothing much to contribute.  I'll have to keep the blonde, ironically, for when I intend to be taken seriously.

Cheers~
Regina

Re: MEK/Pazopanib

Speaking of wigs girls, I was loosing hair from a med I was trying for my UC, so I went to MDA here in Phoenix as they all have gift shops with VERY reasonable prices and usually when you mention you have cancer you even get a discount. I got the cutest wig for $60 and the match to my hair is incredible as I have natural platinum looking white, thanks Mom. I love wearing it except in the summer here its way too hot, so now I can start wearing it again. But Cancer gift shops is the way to start. Once you try them on you will love them. Hey, Kris you saw mine. Yikes I should not ask you to be honest as you will! Still love you, my cookie. In case you didn't know Kris drove from PHL to Milwaukee to spend a few days with me at a Lake T and I used to go to every summer. It stormed daily, there was no Karaoke but we had a good time. Lots of crying and lots of laughing. I miss you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: MEK/Pazopanib

Thanks for the clarification Regina.  Are you on cabo as part of a clinical trial or just as a chemo med?  I'll have to ask my doctor if that would be something worthwhile for me if/when the Paclitaxel stops working.  Thanks for the info.

Ladies, Regarding wigs...the American cancer society gives them to you for free.  They also give head coverings. You can call the ACS 800 number, or go online to find an office by you.  I had to call the one by me for an appt.  They were really nice.  I got two head coverings - didn't want to go the wig route but she kept asking me if I was sure I didn't want a wig.  I don't know what the limit is on how many wigs you can get.

Peace,
Mary

Re: MEK/Pazopanib

Regina,

Ignore my question above.  I just realized you're in the MEK/Pazopanib clinical trial.  Sorry chemo brain!

Peace,
Mary