OT Cancer study

[HVAC]

I did over 170 visits to the hospital for my cancer study which I found out I got the placebo. I could have gone 15 times for the same chemo but not the study drug over the same period and had the same results. Now they want me to do another study. They are shocked that I am not eager to do another study. I might do it because I am running out of treatment options. I still could get a placebo. They have me labeled a problem patient for getting mad twice when I had to wait over two hours to get my blood drawn. Each time others who came in after me were getting there blood drawn and leaving. I do not mind waiting if everyone else is waiting. Don't single me out. The second time the staff was talking negatively about me with me hearing every word. They looked at me for over an hour then they claimed I was not in the check in computer so had to go to the back of the line. I threatened to pull my IV out right then and there. They took me straight back. It is bad that I have to be that dramatic.

You also have to pay to be in a cancer trial. So 170 visits versus 15. I had 9 ct scans and a bunch of study related tests. When I told the doctor how ticked off I was she suggested counseling.

Alex

[mikeysmom1995]

Oh Alex,
I'm sorry you have so much to deal with. Those B#######s. Sorry! I can't even cuss right on here I'm so mad.  Problem patient? How dare they when you are so sick. You didn't ask for this. They have no idea of the level of fear, pain, and frustration you are dealing with.
  They are very quick to submit to the insurance company for payment. They all need to be taught some lessons in kindness and empathy. What happened to human decency?
Oh those B$$$$$$s.  I'm sorry my friend. I'm siething mad right now for you!
I'm sorry! I just ranted at your rant.
I am saying many prayers for you brave lady.
HUGS, barb

[jensequitur]

Keep ranting - the state of medical care in this country is bad enough, but when you're sick, it's even more difficult to get the care you need.

[HVAC]

Thanks Barb. Ranting helps.

Alex

[bbassel]

I have been reading in absolute horror about this. I thought us ms'ers had it baad. I can't even believe this stuff is happening! I just wanted to write a short note to give you all hugs and luck. I know I have only been around a short time, but it doesn't take long to see how awesome u all are xo
Barb
Keep the faith!

[HVAC]

Thanks everyone

[candy158]

I am so sorry that these damn Dr's think they can just play with our lives.  I 'jm sorry it just makes me crazy to think that Dr's and their placebo we given to you, I know that sometimes they just play with us.

I also hope that you can help with the MS study, I am praying so hard right now for you my friend,

Keep the faith, and know that you are loved.,
Candy
xo

[HVAC]

Kelly,
  I asked about removing my spleen. The doctor said the risk of bleeding out is too high and once it gets to the spleen it will move through the blood supply to other organs. I have had cancer in 14 places in my abdomen so far.

On the good side my pain clinic has been so good to me I now live a normal life. I would not know I had cancer accept for the treatment. The chemo also keeps the MS down. I fall every once and awhile and the double vision is permanent. but all my damage is old. They look at my MRIs and eyes and are surprised at how old the nerve damage is..

I am in a genetic study for MS. I hope they can learn from my almost 50 years of MS with all old symptoms. Also my cancer could be worse. I could have a colostomy, a bladder bag, or have to have my lungs drained every few days.

Alex

Alex

[karryon55]

I am so sorry you have had to deal with all of that rubbish, rudeness and incompetence but to be honest this doesn't suprise me. I have spent a lot of time on cancer wards and I have seen some doozies believe me. It doesn't make it right rather makes the world look pretty sad and pathetic if this is how we treat sick people.

Please don't let any of these have Crocs stop you from standing up for yourself, your health and wellbeing. At the end of the day what does it matter if you have a file full of notes saying you are difficult, which you know you aren't difficult. It means nothing to these people unless the tables were turned and they were in your shoes.

You have every right to feel pretty annoyed right now and you vent as much as you like. Just don't let these horses a$$'s dissuade you from following what you want to do for your health because that's only a decision you can make.

Hugs,

Karry.

[anon07072023]

Can you have your spleen removed? When my dad had Hodgkin's they removed his spleen. Or is it too late to do that?

Sorry you're going thru all of this and they're not making it easy for you.

[4happygnomes]

I am so sorry you've been treated so poorly!  I wish I could come with you to one of these appointments, although I am small in stature, I can give a good "what for" to help put them in their place!  They should be PAYING you to participate in these studies, after all..you are providing a surface to them by allowing them to "use" your body and will make millions off future sales of the drugs that come from these studies...how infuriating!  

Hang in there!

[supermum_ms]

Alex,

I'm stunned this type of behaviour is going on, what the hec is wrong with them? Medical staff are suppose to give a dam and if they've become so immune to the suffering of the people they see everyday, they have no blasted business being in that line of work.................petty punishing bullying tactics towards cancer patients is beyond shameful!!

You have a right to be ticked off, if this BS is what you and other patients have to put up with being involved in their research project, they should hang their heads in shame..........

HUGS..............JJ    

[HVAC]

Kelly

I am out of the study. They stopped it when my ovarian cancer spread back to my spleen. The spleen is not good because it is now in the blood supply and can go anywhere. I did have it in the liver and spleen and the other chemo killed it. But because it came back I can't be on this chemo again. My breasts are fine or at least my breast doctor says I should not worry about them while I am in chemo. I have the choice of two studies or one more chemo. There are not a lot of options left.

Ess,
   I get tired of being treated like cattle. There was no one in the lab at all and this lady went up to the desk they told her she had to go back to the que she could not come up to the desk until she was called. They immediately called her. She had just found out her cancer had spread so she was upset. They called a social worker and now she is a problem patient.

They have a captive audience. Duke is so much better than UNC. If I stayed there I would have died two years ago. They are are only two choices for my insurance and most peoples. Venting helps.

I have never said anything to the doctor, but I felt she needed to know. I have a friend who is also her patient who had a bad experience with her study and the nurse I had and won't do anymore studies. They are dealing with very sick people we do not need extra hassle.

I would write a letter but they are careful to not let you have contact info of the higher ups. Especially me because I sent my discharge papers from my hospitalization at Duke the day I left UNC which said I was on death's door to the president of UNC hospital. My Dr. at Duke was mad because  he is best buddies with the doctor at UNC. It did get the UNC doctor in trouble because he only saw me for the first visit when he said I needed surgery and I had a nurse from then on. He was not planning on seeing me until I finished chemo which was six months.

At least I see a doctor before each round of chemo at Duke.

Alex

[essdipity]

I don't blame you for being furious--I would be too. I'm not sure what you can do about this situation, but if venting helps, vent away.

If you're a problem patient, so what.They're not going to deny you treatment, and if they did, you could go public with it faster than they could say lawyer. As you have found, being meek doesn't help in these situations, so keep on being assertive. It's your life and your health.

Just my opinion, but the doctor who thinks you need counseling for being upset needs counseling herself.

ess

[anon07072023]

I've been out of the loop for awhile. Is this for your ovarian cancer or did it spread to your breasts? Sorry I don't remember. :-(
Is there another chemo that you can try on your own without being in a study? Or is it the experimental drugs that they're relying on now to try to help you - so you have to go the study route?