Anyone participated in a clinical trial?CT but not one I thought post 45

[PNW_AMTS_Dealer]

Toadie’s mum,

This is the program and the dog I am getting, she graduates in two weeks then I can bring her home. A part of me knows I’m crazy getting another pet with such a bad diagnosis, but another part of me just has to have her. I had a crazy Border Collie for 16 years, she was my shadow and so devoted. I rescued her out of the road one night after work. She was so scared and crazy, then become the best dog ever. I miss her so much and there is something about this dog that calls to me, and reminds me of my girl I miss so much. She was a homeless dog also and needs her person, we need each other.

http://www.hava-heart.org/freedom-tails

https://www.petfinder.com/petdetail/31322625/

[hoopoe]

[QUOTE=Toadie’s mom;8030905]
More specifically one that was for a serious illness. I’ve been given options for my cancer treatment, one of which is a blind clinical trial. It sounds like a wonderful alternative to chemotherapy, but I’d be risking valuable time should I be unfortunate enough to be one of the placebo recipients

I will be getting some more details before I make a decision, just wondered if anyone here has been faced with making a choice like this.[/QUOTE]

toadies mom you should be able to get accurate information from your doctor

in cancer treatment, there is no true “PLACEBO” group. You will receive standard of care +/- the product being tested. If you are in the placebo group, you will still receive drugs to treat your disease

If this is a new diagnosis and you are naive to treatment very likely the product being tested is quite a way along and possible you will get a therapy that is an improvement or potential improvement over standard of care.

Each clinical trial has a stringent requirement for who qualifies. If your doctor is not participating directly in the trial,you will likely receive your care at a facility approved to run the trial. They will be able to accurately answer all of your questions

[M.K.Smith]

Hugs and prayers. I lost my husband to cancer. He participated in one trial with his initial oncologist and attempted to participate in another at NIH. However, when they went to do the surgery they found that he had seed tumors in his intestines and sent him home with a good luck and you’re out of the trial.

One thing to keep in mind, most of the clinical trials want you to basically be 100% healthy other than you know things like stage IV cancer. So, if you are receiving feed through a feeding tube, or wheelchair bound it can disqualify you from entering trials. Changes in certain health parameters can also cause you to be pulled from the trial. I don’t know how many hours I spent on the phone begging for my husband to be included on a compassion basis. NOPE!

Maybe things have changed since 2009. I hope they have, but I doubt it. I wish that more people who are otherwise out of options would be granted eligibility to participate on a compassion basis.

But if not, keep in mind that a clinical trial option might not be available if health declines. On the same token, you don’t want to waste valuable time if the treatment protocol doesn’t work. One thing that was heartbreaking to me doing the research for my husband was that often “promising drugs” were treatments that resulted in an average of 3 more months lifespan. In my head, the “next big treatment” should yield results of at least an additional quality year of life or a cure… not a few more months of life.

I recently read an article http://www.latimes.com/opinion/op-ed/la-oe-becklund-breast-cancer-komen-20150222-story.html#page=1 and a quote particularly stuck with me:

The medical establishment tells me I have “failed” a number of therapies. That’s not right: The establishment and its therapies have failed me. Laurie Becklund

Hugs and prayers for anybody with cancer.

[hoopoe]

One thing to keep in mind, most of the clinical trials want you to basically be 100% healthy

no this is not true. trails will set parameters for ECOG status ( OP ask your doctor) and some trials will accept ECOG 2, near 3. Trails do require patient compliance and patients with severe ECOG status are often unable to comply with the requirements.

http://www.npcrc.org/files/news/ECOG_performance_status.pdf

[amastrike]

[QUOTE=hoopoe;8047066]
no this is not true. trails will set parameters for ECOG status ( OP ask your doctor) and some trials will accept ECOG 2, near 3. Trails do require patient compliance and patients with severe ECOG status are often unable to comply with the requirements.

http://www.npcrc.org/files/news/ECOG_performance_status.pdf[/QUOTE]
Okay, this may make me a terrible person, but that table cracked me up. 0-4 is a full line or two detailing the condition of the person. 5 is just “Dead”. Not even the more official sounding “Deceased”. Just “Dead”.

[sid]

Yes. I was a guineau pig for a drug trial from the age of 21 to 34. Not cancer, but for a pituitary tumor in my brain.

I had a choice of having brain surgery (before the days of lasers, mri’s for exact locations and all the precise intruments we have now)…the pituitary is the size of a pea, seated just behind the optic nerve and controls so much of the body’s endrocine system. The choice was to have a surgeon stick a metal instrument in my brain with no sure way to know what he/she was getting of a gland the size of a pea without taking other tissue with it…and being on steriods and possibly other brain problems the rest of my life.

I chose the trial. At Johns Hopkins. I didnt’ know if I was in the placebo group or the meds group (a drug from Sandoz which paid for the study).

I had to drive from rural VA to Hopkins in downtown Baltimore and be there by 7 a.m. Did it for months…then called back and did it for years. The side effects of the meds were horrible at first, then eventually my body adapted (sort of).

I don’t regret doing this. One of the darkest times of my life, yet is now a great story for me in and looking back at my life and that terrible health challenge.

The drug (trade name called Parlodel) eventually made it on the market.

My disease was not life threatening but I was fearful of brain damage from the surgery and a life of blindness.

Sometimes the risk is SO much worth taking.

If it was cancer with a poor prognosis by all know means, I would do a trial. Screw the inconvenience…it’s all about keeping one’s life.

My thoughts are with you. Big hugs.

[Toadie_s_mom]

[QUOTE=PNW AMTS Dealer;8045162]

http://www.hava-heart.org/freedom-tails

https://www.petfinder.com/petdetail/31322625/[/QUOTE]
How could you NOT want her!? What an intelligent face!

[QUOTE=M.K.Smith;8046686]
I recently read an article http://www.latimes.com/opinion/op-ed/la-oe-becklund-breast-cancer-komen-20150222-story.html#page=1 and a quote particularly stuck with me:

Hugs and prayers for anybody with cancer.[/QUOTE]
I’m so sorry about your husband.
I posted a similar editorial on my FB. I don’t have breast cancer, but my sentiments are the same. Here’s the one I saw http://www.huffingtonpost.com/leisha-davisonyasol/october-pinkwashing_b_4102424.html

[QUOTE=hoopoe;8047066]no this is not true. trails will set parameters for ECOG status ( OP ask your doctor) and some trials will accept ECOG 2, near 3. Trails do require patient compliance and patients with severe ECOG status are often unable to comply with the requirements.

http://www.npcrc.org/files/news/ECOG_performance_status.pdf[/QUOTE]
I’m a 1, but if my Drs keep effing around I’ll be a 2 before too much longer!

[Toadie_s_mom]

I did get the answers I needed about the trial, but unfortunately things have taken another turn for the worse. As we’ve been suspecting for the last few weeks the tumor on my spine (that I had surgery, then radiation, to remove a year ago) has returned :mad:. I’m meeting with my neuro surgeon tomorrow, as both my oncologists believe that another surgery is my only option now.

It’s a very risky surgery, but if I don’t take the chance I will be paralyzed in the very near future. Since I’ve already experienced being about 50% paralyzed I know what’s coming, and I don’t want to live like that.

Will update after surgery!

[JumpQH]

Many, many jingles for you!

[todaysspecial]

Good luck, Toadie’s mom, we’ll be thinking of you.

[IFG]

Jingling wildly for you Toadie’s mom!

[sid]

My prayers are with you. You sound like a tough gal…that will carry you through I’m sure. My very best wishes and big hugs to you.

Susan

[amastrike]

Jingling!

[Polydor]

Jingles from Canada!

P.

[Austin_Rider]

We’re all thinking of you and rooting for you!

[Chall]

A prayer for you, and a hug.

[jennywho]

Jingles, prayers and hugs

[Marshfield]

jingles

[Toadie_s_mom]

Thanks everyone for the well wishes.

Appt with my neurosurgeon didn’t go as expected. He doesn’t want to do surgery because, in his words “it is beyond the charts risky”. Minimum I would probably lose my voice, and the ability to swallow. Worst case scenario is paralyzation, or death. :eek: he took my case to a conference, and he said the other surgeons agree with him. He now wants me to see another radiation oncologist to talk about cyber knife surgery. Sounds like a wonderful alternative, but of course still risks involved.

I am now playing the inevitable waiting on the phone call game

Beautiful day here, so going to try to get out to the deck, where I can see the ponies. DH said “his” horse tried to follow him out the gate this morning. He was sure he was asking to be brushed. Dylan isn’t very personable, so I was happy to hear this. Maybe they will bond!

[JumpQH]

How frustrating. Jingles that you hear back soon.