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Phase I Clinical Trial

DM_K's picture
DM_K
Posts: 51
Joined: Mar 2018

I started my phase I clinical trial a week ago.  The trial consists of taking 2 small chemo pills a day and an immunotherapy infusion every 3 weeks.  The name of the chemo drug is Cabozantinib (XL 184) and my immunotherapy is anti-B7-H4 antibody.  The chemo drug is used for other cancers, including USC I believe, I want to confirm this at my next appt.  The reason why this study is considered a clinical trial is because the chemo drug has never been administered with the immunotherapy.  I'm having less lymphdema and my abdomen doesn't feel as distended with ascities.  I still had 1.4 liters removed via paracentesis last Thursday but hopefully that will ease up.  Not a lot of nausea side effects other than if I over eat, I still have to keep my meals small.  My brain wants me to eat more but my gut says NO!  My gut feels like I'm carrying cement if I eat too much.  Some body aches but nothing too bad or requiring pain meds.  I continue to lose weight but that might be from taking thyroid medication now, on top of not eating a whole lot.  If I could just get this digestive tract working the right way again, I would feel like a million bucks!  Still taking 4 senokot tabs a day, otherwise nothing moves.  I really believe the 30 rounds of radiation gave me an ilius.  Potassium and magnesium supplemental pills are taken daily as well.  The potassium gags me everytime, if anyone knows an easier way to take this huge pill, please let me know.  I already cut it in half, otherwise I choke.  I stopped going to physical therapy, it seemed too much measuring and not enough exercise. 

I always look forward to coming here and reading all the updates, please keep them coming.

I hope everyone is having wonderful summer, only 4 1/2 more months until Christmas - hehe :)

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

You can buy powdered potassium and mix it up in about 8 oz of orange juice, or whatever you want. It'll taste mildly salty but not bad. That's how I get mine down. 

sshhaarrii
Posts: 38
Joined: Oct 2016

DM_K, So sorry to hear about your recurrence. I sure hope this new clinical trial kicks the cancer out of you.

30 rounds of prior radiation, plus 2 brac's can certainly do a number on the digestive track. I only had 3 brac's and have thickening of the colon. 

Sometimes I have trouble swallowing pills, so I will crush them up and mix them with applesauce.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Thanks for the update DMK. It sounds like this trial is going to be tolerable. I hope it provides great results for you. The only other suggestion I can think of other than what has already been suggested is to chew up some food and add the pill just before you swallow. That helps me.

Please keep us posted as you go forward. We are your cheerleaders!

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

When I was in the hospital getting chemo, I had to take those big potassium pills. I, too, found them hard to swallow even when they were cut in half. A couple of nurses broke them down and putting them in a small amount of applesauce. That was much easier to take.

But I believe there are some types of potassium pills that aren't supposed to be crushed. Perhaps you can check with the doctor's office if the applesauce option would be okay for you.

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Thanks for the update! Hope the chemo and the study drug do the trick!! Keep us updated on how you are doing. You are in my thoughts and prayers. xo

jan9wils's picture
jan9wils
Posts: 69
Joined: Mar 2017

I am glad that you were able to be included in a trial. It is good that you haven't needed pain medications, which would probably make your elimination difficulties even more difficult. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

DM_K, thank you for keeping us up on what is going on.  I just shook my head on your physical therapy assessment.  Sounds like you wanted more of the exercise, which is what it is supposed to be about.  

DM_K's picture
DM_K
Posts: 51
Joined: Mar 2018

Hi Ladies,

I received my CT Scan result today.  My cancer is stable, meaning it's not increasing or decreasing.  I'll take the good news of not increasing.  I'm going to continue the clinical trial.  Overall I'm doing ok, weight is staying the same, eating a little more but still get a lot of abdominal discomfort after eating, although the nausea has improved.  I do get short of breath with little exertion, but that's to be expected.  My lungs are clear so far so that's good.  My goal is to continue to increase my food intake, mainly protein, and put some weight back on.  I'm still getting potassium and magnesium infusions but not having to take the pill form, thankfully! 

Maybe soon I will be able to start enjoying life again.

Edit to add - My paracentesis was half the amount than the last time it was done, thumbs up!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

DMK, that is great news! Thanks for giving us an update and I'm sending loads of positive support your way for continued improvement.

Love and Hugs,

Cindi

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

DM_K, thank you for sharing the great news.  

Armywife's picture
Armywife
Posts: 320
Joined: Feb 2018

What great news!  Thank you for sharing it!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

You keep it up!

DM_K's picture
DM_K
Posts: 51
Joined: Mar 2018

Hi Ladies, just another little update.  Even though I felt I was feeling better with nausea and vomiting during my last clincial trial, it eventually got bad again.  I thought if the cancer didn't kill me this clinical trial chemo would finish me off, so I discontinued it and decided to go into to home care hospice program.  That only last 4 days as I got some of my strength back and some room for food.  I decided to discharge from hospice and go into another clinical trail with chemo given every 3 weeks IV.  I am doing ok, I still struggle with room for food but I don't feel nauseous 24/7.  I say "room for food" because I usually want to eat in my mind but my body has other plans.  I always felt like I had a cement block sitting right on top of my stomach that seems to be gone for the time being.  Unfortunately since I stopped the first clinical trial my abdominal fluid is coming back in spades.  I had 2.8L taken off after 3 weeks and another 2.5L after 2 weeks.  My feet, ankles, and calves are very swollen now, which is something new.  I get really short of breath with any exertion too.  I'm going to start decreasing the time in between each paracentesis to see if that helps; in addition to the new clinical trial chemo IV helping as well. I'm having a pallitative care NP come out about once a month to help with my nausea and vomiting management. 

Something kinda cool - I was the first patient to start this clinical trial at my cancer hospital, more people are signing up now. 

Here's to hoping to eating more!

ETA: Grammar clean up.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

It's good to hear from you but not so good regarding those clinical trials. I sure hope this one works!! I know what you mean about your brain being hungry but your stomach won't cooperate. It happened to me when I was going through chemo. Hopefully, they'll come up with something to control the nausea and vomiting issues!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Thanks for posting DMK. It is so good to hear from you. I sure hope you can get some relief and are able to start eating again. That has to be so hard. I hope this new trial is easier on your body and gives you some positive results. Please keep in touch when you feel up to it. We are all here for you!

Love and Hugs,

Cindi

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