#33209 03-07-2004 02:59 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Stephany,
There is some excellent information on this site about clinical trials. Go to the site map or do a search. There is also a site called clinicaltrials.gov that lists approved clinical trials around the country.
I stand ready to be corrected on the following:
I don't think anyone gets placebos in Phase 1 clinical trials. I can't say I have paid a lot of attention to Phase 2 & 3 of trials, but everyone I know and everything I have heard is Phase 1 everyone receives treatment with the investigational drug.
There are some trials where maybe people receive different doses of the drug or a different protocol for administration (timing such as weekly, daily, etc.)
Also if the first scans the drug is not working the patient is taken off. (at least with the trials and doctors I'm familiar with)
As I suggested please use the search and read up on factual information instead of just my limited knowledge.
Take care. Best to your Mom.
Dinah | | |
#33210 03-07-2004 05:34 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Dinah, you are right about the importance of looking at the info provided where you have indicated. I do want to clarify that my comment about feeling most comfortable with Phase II trials is due to personal preference on the part of myself and my husband: Our reasoning is based on our understanding that in Phase I everybody gets the drugs, but they have only previously been tested on animals so safety is an issue. This sounds a little risky to me, but that's just my opinion. Phase III didn't appeal to my husband because he WANTED to get the meds and not take a chance on getting the placebo. So, Phase II sounded like the "best bet" for us--you get the drugs and one round of testing has been completed already--presumably this is in everybody's favor. That's simply our opinion based on the research we did on our own. No person has communicated to us any experience that specifically was "for" or "against" any particular phase. But, since we cannot participate, we'll never know one way or the other.  For everyone who is in a clinical trial, no matter what phase, that beats having no options. Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#33211 03-07-2004 11:41 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Christine,
I am so sorry to hear of Scott's battle. It is really all of our battle since Scott is one of us.
From what I have read about cancer and its etiology is that the cancer cells are programmed to seek out blood supplies, particularly arteries.
I truly believe that it is much harder to be a caregiver than a patient (I have worn both hats having been my fathers primary caregiver while he was in hospice care while dying from non-Hodgkins lymphoma). My wife still struggles with issues from my cancer.
I am putting your and Scott's name into my churches prayer group and I will be praying for you daily.
Today our pastor gave a message about "worry" and said one thing that really touched me (and I frequently struggle with this myself): "To worry about tomorrow is to rob today of it's joy"
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#33212 03-08-2004 02:25 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Thank you, Gary. Those are wise words.
We have been trying to abide by that sentiment each day but sometimes it is a struggle. We are so thankful that the time we've had together, although short, has been (and still is) filled with love and joy.
Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#33213 03-08-2004 02:09 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Christine. My heart just breaks for you and your family, I wish we could all just give you a big hug.
May your God be with you.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#33214 03-08-2004 03:42 PM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | I asked the dreaded question of the doctors today. How long?
"Maybe two months."
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#33215 03-08-2004 04:51 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Christine,
My heart goes out to you, Scott and the girls. Words cannot say how much your story has touched me and my family. You are all in my prayers and have been over the past couple months.
There is a reason why we meet people in our lives and it is apparent that Scott needs you in his life as much as you need him.
I will continue to pray for you all....
Danielle
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#33216 03-09-2004 03:07 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Christine,
I'm so sorry for what you are going through and wish there was something I could do to help. Just know that you have the strenght for this. We are praying for you, Scott and your daughters.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#33217 03-09-2004 04:24 AM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Oh Christine,
You have our love and our prayers to help you through this time. I am so sorry for what you are facing.
God Bless You all
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#33218 03-09-2004 08:07 PM | Joined: Apr 2003 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2003 Posts: 30 | Christine, I really do not know what to say with the bad news. We have been corresponding through the private emails about our husbands and what sort of treatments they have had and I tried to share my experiences with you to help you feel better as well as myself. My heart goes out to you as I know how I would feel. I wish I could make it go away. Try to stay strong for your family as you have been in the past. Keep loving and caring people around you. I really do not know what to say but I am so sorry and you will be in my thoughts. Stay in touch as I know the people here are a great comfort.
Becky | | |
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