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Pazopanib Clinical Trial--very good results so far

JAWsSavannah
Posts: 57
Joined: Jun 2009

I just returned from the Mayo Clinic where I got some very good news re: lab and scan results. My Tg level is down to 125, from a high of 1225, then 333, now 125. That's quite an improvement for seven weeks of therapy, including one week off recovering from the side effects of the drug.

Scan reports were all positive, too. Sizes of the multiple tumors were reduced, from about 10 percent to over 30 percent. Even better news is that the image shading indicates the tumor tissue is dying, so even if a tumor is 90 percent as big as before a good portion of the tumor tissue is now dead tissue.

Is it too soon to celebrate? :)

jcvolt
Posts: 69
Joined: Mar 2009

I did not know they had started human trials... I have heard the results on animals have been impressive. So how were the side effects? Not as damaging as RAI hopefully.

JAWsSavannah
Posts: 57
Joined: Jun 2009

I'm in phase III of the trials--not sure when phases I and II were running but I believe it started a couple years ago.

I had no problems with RAI other than it didn't work--a condition for getting into the Pazopanib trials, BTW. Side effects have been pretty severe but at the current dose (600mg) they are bearable. I couldn't handle 800mg. The worst for me has been extreme fatigue. I can do light tasks in the AM but I'm usually in bed 2 or 3 hours in the afternoon. Very sensitive skin is also an issue, usually in the mouth and tongue. Regular toothpaste sets my tongue on fire but I've found a type without mint flavoring and it has provided relief. I've lost a good bit of hair and am told to expect what remains to turn pure white.

It's certainly preferable to the alternative. :)

JAWsSavannah
Posts: 57
Joined: Jun 2009

I had blood work done at the Mayo today and had more good news when I saw the doc this afternoon. My Tg level has continued to decline--now 112. That's not as dramatic as the first two readings since starting pazopanib but I didn't expect the 60-75% decreases to be sustainable forever.

The second round of CT scans will be in late August so I'm keeping fingers crossed that the good results seen the last time will be repeated. It would be great to get that Tg level down some more, too. :)

JAWsSavannah
Posts: 57
Joined: Jun 2009

More good news from this week's trip to the Mayo. Tg is down a little more, to 109. Tumors are all either stable or shrinking. I don't have the reports in hand but will know more once they mail them to me.

Side effects are about the same. I had a haircut which got rid of most of the old hair. About 95% of what's left is pure white. A friend reminded me that white hair is a sign of exceptional wisdom, not just the regular wisdom that comes with gray. :) It's still falling out but I don't have any bald spots, yet, which is not too bad for 61 years.

The weirdest side effect is tactile sensitivity on my extremities. Finger tips are pained by very light pressure. If I sit at my desk with my arms in contact with the desktop the parts that touch will be painful after a few hours. Once they reach that state they stay sensitive to any pressure.

Fatigue is about the same but I'm adapting to it by not doing much of anything but sitting at the desk, reading message boards and surfing the web. I can work in the kitchen or the shop for an hour at most before I have to either sit or lie down.

It's not the sort of life I led five years ago but it ain't too bad. :)

ASBASB
Posts: 2
Joined: Feb 2007

Hi.
I saw your post while surfing information in considering this trial. Assume you live in Savannah? I'm in North Carolina. Spent 1.5 yrs at Mayo Jax in the Zactima trial but had to quit in March due to progression (metastatic Medullary Thyroid). Tried to get into the XL-184 at Johns Hopkins but their sponsor says I've had reduction, not progression. Go figure. I figured out that that sponsor was counting one of my liver cysts (previously determined by Mayo to be a non-tumor cyst) as a tumor. All in all, the shrinkage in this non-tumor was counted as tumor and negated the progression in the real liver tumors so I didn't qualify for the trial.
Anyway, I assume you're working with wonderful Carolyn Beiber! Not until I went elsewhere did I see how patient friendly everyone at Mayo is!
It sounds as though you're having great results with this Pazopanib. The side effects that you mention sound like those related by people on the XL-184 trial also. The hand/foot syndrome was the most worrysome to me...along with the fatigue as I sleep a lot already....the white hair I can live with :).
I'm still considering this trial and will have to call and talk to Carolyn. The fact that Glaxo doesn't offer any travel reimbursement is a problem for me as it would cost a lot and I'd have to go every month.
I was wondering, have you been in any other clinical trials? How does this one compare in terms of side effects? Do you have bone, liver, lung mets?
You can send email to my address please, as it is easier to check than this site.
sasbailey@triad.rr.com
Thanks.
Alicia

JAWsSavannah
Posts: 57
Joined: Jun 2009

I sent you an email, Alicia.

lone
Posts: 1
Joined: Oct 2009

i am a 46ny old woman with lung cancer spreeding to bones in left leg. O am in the same treadment as you i think...i just started it in september and my tumor is now increased 25 % i am from denmark ánd i got my choking diagnose 13. august this year.. i have the same as you with my new hair :) and the hands and féets and the fear. i get the pazopanib togheter with chemoteraphi. tomorrow i go to hospitql for the 3. time to get the chemo. It makes me sick. I live alone with my 2 kids. A girl 11 y and a boy 19 y. So i belive in this threatment...lots of warm thourghts from denmark. Lone

my email is lonebislev@msn.com...would love to stay in touch. Hope my english is ok :)

JAWsSavannah
Posts: 57
Joined: Jun 2009

It sounds like you have your work cut out for you, Lone. (That may not translate very well into your language...I believe it's called "idiomatic" or something like that :) And, no, I'm NOT calling you names. :) )

Is your cancer thyroid-based and it went to your lung? That's what has happened in my case. Most thyroid cancers grow very slowly so they are usually survivable.

I would be very happy to stay in touch and will send you an email soon.

JAWsSavannah
Posts: 57
Joined: Jun 2009

I forgot--your English is just fine. I can assure it it's 1000 percent better than my Danish. :)

JAWsSavannah
Posts: 57
Joined: Jun 2009

My side effects continue to change, evolve, fade away and return. The major constant is the fatigue. Lately it comes on right after I eat breakfast. So now I'm taking a nap in the AM and, frequently, another one in the afternoon. This has started to affect my regular sleep but since I'm not currently employed that's not a major problem.

Recently I've have increasing dull pain in some of my teeth, deep in the roots or bone.

Constant light pressure on most any part of my body becomes painful, eventually, it's worse on my legs where they touch the front of a chair and on my hands and forearms where they rest on the desk when I'm on the computer for a while.

I'm still losing hair but have a way to go before I'm bald. At the moment I am just dealing with a few thin spots that might be bald in 6 months or a year. The hair is now solid white or a very light blondish gray. As a kid I was a towhead so I kinda like the color--must be entering my second childhood. :)

I'm due for another trip to the Mayo. Next week I will be there for a full day--dermatologist, blood work, CT scans, then the consult with the doctor. I'm always amazed that, when I see the doctor in the afternoon he has the lab and scan results done just a few hours earlier.

LBelle
Posts: 42
Joined: Oct 2009

How are you feeling so far? I've come to this post and see if you're still doing okay...

RWBMG8668's picture
RWBMG8668
Posts: 9
Joined: Jan 2010

Came across this forum today and it is the first time I have read about someone else on this trial drug. I have been taking this medication for about a year and half now and have experienced similar side affects. The good news is the medication appears to be working! I get CT scans every 56 days and have learned to live with the side affects though at times that is difficult it beats the alternative. I am 41 years old and have a son that just turned 5 last week. I actually got the cancer diagnoses on his first birthday so every one that I celebrate with him is special.

Everything that you have written has been things I have experienced. My hair went from dark brown to white/blonde and the biggest issue I have had too is fatigue. Someday's spending a whole day with my son leaves me drained but I wouldn't miss those days for the world.

I would love to talk more and to know how things are going with you! I am back at Mayo on Feb 2nd and you are correct it is amazing that you can have all these test and scans and meet with the doctor and have the results the same day. I truly believe that Mayo is the best place I could be though! It is a great place!

Good Luck

Joel

miladyx
Posts: 85
Joined: May 2009

... Do you have joel? And where and when has it metastasized?

RWBMG8668's picture
RWBMG8668
Posts: 9
Joined: Jan 2010

It is follicular thyroid carcinoma and has spread to my lungs and my lymph nodes also.

I was diagnosed Dec 29th, 2005 (my sons first birthday) I had two surgeries and two rounds of RAI. I went hypo three times in 2006 for scans and RAI and still had an elevated TG level with a suppressed TSH.

In Aug of 2008 I had a 1.3cm mass in my lung and some lymph nodes of 1cm and greater. I had micro-metastasis scattered in both lungs. I started the trial drug in Sept of 2008 and I am currently still on it.

The side affects are many and fatigue is the biggest issue that I am having. I haven’t lost any hair but it has turned white/blonde. I can say it isn’t any where near what I went through going hypo three times in one year!!

miladyx
Posts: 85
Joined: May 2009

... Wasn't there in the beginning? It happened later on?

RWBMG8668's picture
RWBMG8668
Posts: 9
Joined: Jan 2010

It was probably there but two small to show on a scan. I had PET scan that showed minimum uptake in the lungs so that didn't locate it at that time. During that time I was only going to the doctor every six months. The lymph nodes showed on an X-ray and then I had a thin slice CT scan that showed the lungs.

I always had an elevated TG level but they were stumped on what was causing it. My doctor said normally they could pin point a TG level of 2 mine was in the 80's and they couldn't find it and he admitted it was a little embarrassing for them. I had multiple little spots contributing to the elevated TG level and nothig showed until it got large enough to be seen on the scan.

miladyx
Posts: 85
Joined: May 2009

I saw your post in another thread. Did u by any chance use to post on facebook?

I swear I saw your post or someone very similar to you there!

RWBMG8668's picture
RWBMG8668
Posts: 9
Joined: Jan 2010

I have posted on Yahoo before but that was awhile ago. I am on facebook with family and friends and I do having a caring bridge site but haven't posted there in awhile.

I get scanned every 56 days so I kind of put it on the back burner until about a week before my appointment. I always prepare for the worst and hope for the best. I have been told that they don't expect this to keep it in check forever.

I just joined this when I saw someone else taking the same medication. Sometimes it is a relief to know that you are not alone in all of this!

Joel

miladyx
Posts: 85
Joined: May 2009

But I am glad u r talking and connecting.

Was your tg of 80 on meds or unsuppressed? How high is it now?

RWBMG8668's picture
RWBMG8668
Posts: 9
Joined: Jan 2010

TG level was on Meds and it is now in the low thirties. I have my Endo Thu next week and Mayo in the beginning of Feb.

The scans look really good right now its just no one knows for how long this drug is going to work or what the long term side affects are going to be.

I will do what I have to do though I have a 5 year old boy that needs me and I plan on doing what I can to make sure that I am around as long as possible.

longie's picture
longie
Posts: 1
Joined: Nov 2010

I am also doing a clinical trial involving pazopanib and chemo. Just had first re-check last week. Results showed no new and slight shrinkage in 5 locations. 4 small lung and 1 small mass under surface of skin on back. Dealing with melanoma stage4.Will stay on trial going into new cycle period. Anyone else? 11/2010

nkongovi
Posts: 5
Joined: Jan 2011

Hi RWBMG8668

I have papillary thyroid carcinoma with mets in the lungs, diagonised recently in July 2010. My Tg count after surgery and RAI is 1500 and scares the hell out of me. So I guess asking my endo abt this clinical trial wouldn't be a bad idea. I live in los angeles. CA

Any advice.

candyland
Posts: 5
Joined: Jan 2011

I also have papillary thyroid cancer of the lungs. Just found out this past week. I hv 2 nodules. I go to the Mayo Clinic in Jax. I go next week to see what they are going to do for me. The endocrinologist there wants me in the clinical trials also. May due surgery to remove them. After reading about the drugs tho here online it sounds scary. They have horrible side effects.

I will do whatever they say tho. I'm gonna live..no ifs ands or buts about it.

candyland
Posts: 5
Joined: Jan 2011

Is anyone still using this discussion board? This is the only place I have found that discusses the clinical trials but the last person to respond was back in november or so. I have soo much I want to ask about. I will be starting those clinical trials with the Mayo soon. Please tell me someone is still out there and whats going on with them.

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

I too have lung mets and work with folks at Mayo in Minnesota. They're doing some ground breaking trails.
I wanted to suggest that you might try joining a Yahoo group called Adv-thyca because folks that post to that board regularly are dealing with similar kinds of cases themselves and they may be more able to answer your questions than here, though some followers on this board definitely have potential to help you. The yahoo group page that I am referring to can be found at http://health.groups.yahoo.com/group/adv-thyca/
best to you. i just had six month follow up CT scans today and have many nodules my lungs and am no longer iodine avid. it's scary for sure but know you're not alone.
eileen

miladyx
Posts: 85
Joined: May 2009

sorry about the results of the CT scan Eileen. Does the CT scan show increasing or growing nodules? when do they start the trials?

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

they have yet to be read. my doc here will send the chest CT to Mayo for the docs there to do the comparison and gauge the rate of growth. we know there are nodules and we know that there were more last time than the very first CT i had a year prior so they are looking to gauge the trend. i suppose i'll learn soon if i am still on a monitoring program or if i need to go to trials.

candyland
Posts: 5
Joined: Jan 2011

Thanks so much for that link. I went and applied to be a member. I have nodules on my lungs too but the drs say its a small amount of cancer so I caught it pretty early. Still scarey stuff. I think you should try the trials. I go to the Mayo in Jax and I love it. Will never do anything in my hometown again.

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