Re: MEK/Pazopanib

No prob!

Also, most insurance covers wigs, usually one go round with a pretty high cap, for cancer patients at specific locations.  It's worth a try.  I got a beautiful human hair wig in that way.

~Regina

Re: MEK/Pazopanib

Regina -
My husband is in the trial.  He started on 10/23.  He was diagnosed in April and was on Gem/Cis for about 5 months and it quit working.  It quit working right in time to get on this trial.  We go back to MDA on 11/20 for the first blood work apt. We are working with Shroff and Zinner as well. 
My husband, Travis is having worse side effect than he did with Gem/Cis.  His rash is really bad and his belly bothers him.  Gas and diarrhea.  Tonight he even has chills.  His blood pressure has gone up too. 
I wonder if we will be at MDA at the same time?   
My husband is 38 and we have 3 little ones.  Ages 6,4 and 2. 
Praying that this trial does some good!!!
Carrie Roberts
From Atlanta

Re: MEK/Pazopanib

Well, Ladies, I still have hair... Not sure what the deal is since I lose a good amount daily... But I won't complain! I have been nominated for a wig from Locks of Love because of a friend. I will get it in 2014. I have a head of hair still, but I used to have a really thick head of hair! I did look into different avenues... There are places around here with donated wigs for cheap or free. If it gets to that, I will look into them, too.
Lainy, your wig looked wonderful! I'm sure you don't think so, but honestly, I knew you said your hair was thinning... but I thought it looked so good your hair must have stopped thinning. Really!
Regina, I want to see the tree this year. Most of my life I've lived near NYC but I have never seen it! I would love to get a few of the "locals" together for a visit. It's a car and train ride for me! But I don't mind it... I did it for 2 years to Sloan.
And I have a couple of head coverings. They look like loose doo-rags, which I wear riding. ACS also will send a catalog for wigs and tape on bangs, etc., to have sticking out of head wraps.
And Lainy is a hoot in person, too!! Lainy, I want a sauerkraut egg roll!! lol

Regina, that's hysterical! I would probably do that! When I started treatment, I was told to be prepared to lose my hair. So I went and had my crowning glory chopped off short to prepare... And nope! But my boyfriend at the time and I had a blast looking at the wig catalog. We decided I was going to be a red head! Right now I dye it to have a very slight reddish cast, but this was much redder!

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 Cookie, NO, no more sauerkraut egg rolls. For you newbies I spent some time at a friends lake house last June and had never met Kris. She drove from PHL to Milwaukee to spend a few days with me. Here we had never met and we spent 3 days laughing, crying and being silly. Oh, Kris, Stan, Neil and Jeanne are coming out here for their 17th Thanksgiving with me. How have you been doing with your trial? Wouldn't you know it....one of our Karaoke places sold and has had a change of venue. Not sure yet what it is. But we still have another good one waiting for 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

Hi Carrie~

Sorry to hear that your busy family has to go through this, of all things.  I wish I could have met you both, especially because we'd be on the same schedule, but I have succeeded in having myself switched back up to Johns Hopkins, which is much close to NYC.  I had gone there initially, but they had some bureaucratic glitches creating a problem enrolling patients on a timely basis.

Your team at MDA is terrific.  Shroff is a great listener and allows for questions with no rush.  she appears to be extremely knowledgeable.  Zinner is my personal favorite because he has a good sense of humor, lively spirit and a professor's enthusiasm for explaining the scientific basis of anything you ask about.  Lindsay Law is a very caring nurse, and Chichi, Zinner's NP is a bundle of friendly and practical energy.  Jing is very competent, but beware of subtle language-based (probably) misunderstandings that could seem uncaring or as repudiations.

There is much excitement around this trial, so I have a lot of hope for us.

As per side effects, I had all the same ones.  They seemed to mellow with the passage of time and learning the patterns and remedies.  At one point, I had acne so bad I felt that people were looking away so as not to appear to stare (at a 53year old with acne).  I took topical antibiotics and soon began oral doxycline, which have worked very well.  Still healing. but no more whiteheads.  I had a red dot-like rash on my groin and my right inner elbow, but they are disappearing and didn't bother me much.

I have occasional diarrhea, but it is quickly stopped with immodium, maximum of two have been needed.  You are advised to catch it right away.  I have often felt tired for the rest of the day after these bouts.  Quick and ongoing rehydration is critical.  I've even used some Pedialyte on some occasions, with success.  Be sure he avoids sugar alcohols like maltitol, inositol, etc., which have a laxative effect.  I used sugar-free candies and a fizzy electrolyte replacement tab to keep my mouth wet and rehydrate and kept waking up with diarrhea.  I had no idea for quite awhile.  -- Don't assume that all odd symptoms are just the meds! -- I do often have gas causing me, on some days, to burp incessantly.  (my peeps are used to it.) I shifted my pill time to just before bedtime to avoid the feeling of tiredness and belly ache I often got an hour after dosing.

As per blood pressure, I took some pride and solace in mine having always been low (90/60), having been an athlete all my life.  In the first month that I was on these meds, it rose to a bit higher than normal (125/85), but it has not continued to rise; in fact, it has come down some.  In fact, all the lab tests that rose as an apparent result of the meds, have actually come very close to normal or acceptable now, seven weeks later.

You are in good hands at MDAnderson -- you can just feel the science going on there -- but be sure to stay on top of it all and press for answers to questions you have.  They have the patient care figured out pretty well.  I advise you to stay at the Rotary House, but book far in advance.  Gorgeous pool, very good dining (there's very little else around there, if at all), very friendly people, information, patient coordination, everything.

Let's stay in touch!  Good luck!
Regina

Re: MEK/Pazopanib

Kris et al~

I would love to get together to see the tree!  I live on the Upper West Side and I still don't see it in person (avoiding all those silly tourists wink ).

I am now courageously sporting a very short, styled hairdo and doing my best to put on a face that says, "I feel beautiful."  My friends see right through that and lie back in response, "You look amazing!"  uhuh.  It just ain't me, but it's another interesting challenge.  As long as I don't have acne to go with it.

So, get in touch when you're ready to come in.  I'll help us plan whatever.

Warm short-haired cuddles all around.
Regina

Re: MEK/Pazopanib

Well, my scans look good, but i don't.  my hemoglobin kept plummeting for no apparent reason, so i finally had a transfusion after having ruled out internal bleeding with a colonoscopy/endoscopy, sonogram, and CT.  I was disappointed, putting it mildly, not to have been re-energized afterwards.

I am also taking lots of oxycontin since I have a great deal of pain in my bloated abdomen and my back, again with no explanation.  I took a break from the meds due to the latter and the fact that ALT was quite elevated. In the last week, all liver enzymes have come down, as has CEA, but so has hemoglobin, rbc, wbc, lymph, platelets.  Except for hemo and rbc, those had all been fine while i was on the meds.  seeing a hepatologist tomw.

Not getting a lot of holiday shopping done, but being doted upon by darling daughter.

Kris--  any tree viewing coming up?

hugs,
Regina

Re: MEK/Pazopanib

Regina what an ordeal for you as if you don't have enough. Love the doting daughter and I think presents can wait for Birthdays. The biggest present is that you are here and celebrating this years Holidays. I wish for you much improved health in the coming year!

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,
I'm keeping you in my thoughts for you to start feeling better. Christmas blessings to you and your sweet daughter!
Willow

Willow

Re: MEK/Pazopanib

Thanks, all of you!  this has to change, but soon.

Has  anyone here had a red blood cell transfusion that did not restore vitality?  i received two units on wednesday when my hemoglobin was 7.5, and i thought i'd prance out of there, but...nothing!

thanks,
Regina

Re: MEK/Pazopanib

Regina, sorry I can't help with the health questions. I never had low blood counts for very long, and never had a transfusion.
I would still like to see the tree when I get back up north. I get in dec. 29 and have onc visit on 31. So the 2nd  through the 5th is good for me. I don't know if anyone else wants to go.
Have a great holiday and we can have some tea to ring in the new year!! lol

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

Regina...I too don't recall anyone posting on this, but I hope for others to chime in including those non-members not yet signed in. 
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

Hi Kris
on the 5th I will most likely be heading to Baltimore for my visit 1/6.  on the 9th, I will hopefully be leaving for italy.  I will be available anytime before. I hope we can work this out. best,
Serena

Re: MEK/Pazopanib

Hi, I can't remember if you work? If not, I will come up Fri. if that works for you. Then you have Sat. to relax and pack. Of course, that all depends on the weather!

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

And have a great time in Italy!

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.

41 (edited by Regina Sat, 21 Dec 2013 12:13:50)

Re: MEK/Pazopanib

Hi Kris
i don't work now. You?  Friday 1/4?  that would be great.  Let's see who else might be available.  my email is kyraserena@aol.com.
Looking forward!
Regina