Trial follow up took a Year from MDA

FloridaLady

Trial follow up took a Year from MDA

FloridaLady

Can't believe it!  MD Anderson finally called me after a year from the last chemo to see if I had any problems with it.  Yea! I think so!  I could not drive for 8 months, I could barely feed myself, I just started to holding my pen in my hand the same, my hands and feet NEVER stop hurting.  I can't drive more than 25 minutes or how about that I can stand in one place because it is so painful. Yea! I had a few side effects from the trial! 

I asked her if they are still giving this drug to people.  She said "Yes but we are finding long term nerve damage that does not show up until months after the chemo has stop."  I asked her "why did you wait a year to follow up on me?' I did not get a answer.  I wonder how many other people had this drug destroy their nerve endings. There were 68 people in the trial before me a year ago.  How many more...

If they really care about quality of life with treatment they would have followed every patient closely to track all negative side effects.  I also know none of us went into long term remission with this drug.  Progression was in two months.

Flalady

I still can't put on jewelry, can't wear anything but tennis shoes, bind down on my knees, open most things.  Travel more than two hours or I can't feel my feet when I get there.  I just turn 48 way to young to have my life so limited.

Oh! by the way... this was for a trial where I only had cancer one place on my chestwall.

formygirls

This really makes me wonder. With a trial I would have expected to follow you closely--isn't that the point.? BTW what chemo drug caused you these s/e?

TenderIsOurMight

I hear you Flalady. How sad that it took so long for such a simple thing as a telephone call to be placed, after giving you a cytotoxic drug, and obviously a neurotoxic one too.



Such lack of attention only serves to dehumanize clinical trials, and may be one reason why something like only 5% of all cancer patients participate in them. I'm sorry you suffered so and thank you for speaking up on this.



For myself, I signed 4 pages or so of trial papers for third generation silicone implants nearly 2 years ago. I have yet to receive a phone call from the hospital.



Phone calls have proven to be warmly welcomed by patients. They make us feel thought about and nurtured. A thumbs up to any researchers or clinical trial specialists who may be reading....



All the best to you, Flalady.

Tender

FloridaLady

formygirls,

The drug was Aroplatinum.  Germany did a study on it 5 years ago and knew that it was a toxic drug with a short progression time line.

Flalady

FloridaLady

Tender,

I can't believe they have not followed up with you either.  What is sad is if there is a problem we will not hear about it either.

A girl I work with friend just got dx with brain tumors.  They think it is from the Yaz birth control pill!  Her doctor has seen 4 cases of this.  Have you seen any news release of this info?  How long do you think it will go on before they tell the public? (she has not heard if they are B9 yet.)

Flalady

FloridaLady

S**T it just get better...I got another bill from MDA when I got home. It's been a year! If you can get these idoits on the phone, they can't even tell you what it is for. Will they ever get out of my life!

Flalady

TenderIsOurMight

Oh, I'm so sorry to hear this about your co-worker.



No, I've not heard about a link with that birth control and brain tumors. It contains drospirenone, a close cousin to spironolactone. Spironolactone is a diuretic allowing sodium to be loss in the urine causing less puffiness, or fluid retention because where sodium goes in our body, so does water. But this is at the cost of retained potassium. If potassium gets too high in our blood, we can suffer heart consequences like arrhythmia, and changes in our blood's acid balance and muscle weakness.



I hope her tumors are found to be benign and that her doctor files with the FDA online adverse drug report reaction if he has seen four such cases.



Tender