Jump to content

Pet results


TBone

Recommended Posts

Hi everyone,

My doctor ordered a PET scan so we could see if I had an easily accesible tumor for the GVAX clinical trials.I had talked to the GVAX people and that is what they needed to know first.The results show a tumor in my right groin and another in my left armpit that are probably suitable.I called GVAX back and found out I am disqualified now because I have more than 3 active tumors.They knew that to begin with so I don't know if they have changed criteria or what.I have 3 in my brain,3 in right lung,1 in left lung,1 on each adrenalin gland to go along with the newly scanned ones.For right now I am going to take the path less traveled and see if I can gain some strength back.I felt much better today than I have for a while.Thanks for all your thoughts and prayers.Love all of you.TBone

Link to comment
Share on other sites

TBONE

I know you must be disappointed and a bit peeved at the GVAX situation. I am also sorry to hear about new mets. Pls gain your strength and keep on looking for answers that might help. You remain in my thoughts. I guess if your sisters are my sisters then you must be my brother--like it or not lol.

With all the publicity that vaccine received, I think they are being highly selective because the demand was high and the supply low. One bad thing about such trials is that when they are soooo selective, I wonder if the results they get will even be close to the results if and when this treatment becomes readily available--since in the general population of lc patients, tumor sites, sizes, nimbers, etc are so variable. Plus by being so limited in their selections, they may in fact, be ruling out patients by way of "neglect" who may in fact reap benefits from the procedure. The whole thing kind of gets to me, especially since they are also asking patients to pay for the treatment (the parts that insurance companies generally don't pay for) instead of picking up those costs themselves. Again--supply and demand????

Elaine

Link to comment
Share on other sites

Tbone, I hate this so much.

You take a break and recharge a bit. Get some strength back and you will be able to look at what is on the table and what you want to do about it. I'm sending Hugs from Texas and postive thoughts and prayers for a new gameplan and renewed health soon.

love,

katie

Link to comment
Share on other sites

Hey T-bone,

What can I say that the others haven't already said. I guess you need to REGROUP and then hit them with the fact that you want a game plan put in play. Oh... I know this sucks! I'm soooo sorry your news wasn't what you or any of us wanted to hear.

God Bless and Stay Strong!

Link to comment
Share on other sites

Tbone,

There's an organ you didn't mention. It's called the heart and don't ever, EVER loose the "heart" to live life as well as it can be lived no matter WHAT the situation.

I know things don't look so good right now but there is still life to be lived. Take the time you need and when your ready make the decisions you need to make. I'll be there for you.

Dean

Link to comment
Share on other sites

Sorry TBone to hear about the new mets. We too were disappointed to find out my mom wasn't a candidate for the GVAX trial. According to the researchers we have talked to they have changed some guidelines due to FDA restrictions.

Glad you are resting up and feeling a bit better. I pray that you continue to feel better. Blessings to you.

Link to comment
Share on other sites

Guest Thanks

Hi everybody,

Thanks so much for all the replies.I bought some new fishing tackle yesterday.I am feeling better each day as far as strength goes and looking forward to taking my family to Floridaa in April.I will probably opt for chemo when I do get to feeling better.I just don't think I am strong enough for it right now.And I want some quality time with my kids.Love y'all all.TBone

Link to comment
Share on other sites

TBone,

Sorry you didn’t get better news from your doctor.

Collect your thoughts, regroup and push forward.

I work at a pharmaceutical company. The criteria and conditions for clinical trails are very strict. Unfortunately once the protocol is signed, they can not deviate on the patient recruitment. When reading a clinical protocol, I sometimes wonder if we will be able to get anyone on a trial. I do not work for a company that is working on cancer drugs.

Hugs, prayers and lots of positive vibes being sent to a wonderful Southern Gentleman.

dusty

Link to comment
Share on other sites

Tbone,

Sorry you will not get the treatment you were waiting for,

but for the moment get a lot of rest and soon you will be

able to make a good decision about the future.

So many treatments are available that you can choose

from, so do not lose heart.

Prayers going

xo

J.C.

Link to comment
Share on other sites

TBone, take a rest and get ready to kick some more LC-butt.

My mom's primary onc. said that, when it comes to trials, the powers that be only want the "cream of the crop" so that they are more certain to get the results that are favorable. Then, when the treatment is more mainstream, the results are usually not as good because there are more patients whose "odds" are not as good to begin with. It stinks. He admitted it's a matter of getting the money for funding. The better the early results, the easier it is to get more funding.

A really good strategy, as far as my family is concerned, is to stay strong as long as possible to wait out the race for the next great treatment. When the GVAX trial is done, the treatment parameters will change. You may qualify then. And the GVAX may be even better at that time!

Link to comment
Share on other sites

Having moved to centralish/south Florida (from your neck of the woods - Decatur, GA)last winter, I figured out why people move here -- not for the summers, but this amazingly nice weather that should still be around in April -- so hope you can make the trip -- it should do you some good! I confess to having sent mean emails to old friends during teh winter when it was 27 in Atlanta and we were just coming in from taking a walk in shorts!

Link to comment
Share on other sites

TBONE,Sorry you didn't get what you wanted to hear.I think you will feel better and better for a while.It took a month or more for me to feel better after radiation and chemo.Enjoy your trip and when you feel better mabe easier then to make decisions.GOD BLESS YOU AND HAVE A REALLY GREAT TRIP.

FRANK L.

Link to comment
Share on other sites

T-Bone..

I celebrate today, a day where you feel better. I have a very strong feeling you hadn't felt anything good in a looonng time. I too needed to take a break (couldn't stand it anymore.) I stopped after 3 sessions 3 weeks ago.

I go back next Monday feeling better. We'll see what the doc has to say.

Enjoy your break!!

God Bless us all,

Francine

Link to comment
Share on other sites

TBone,

Sorry about your news. Take the time to rest, re-charge and re-fill with lots of energy and strength for the next phase of the gameplan. Kick back and relax and before you know it you are ready for the battle again.

Lots of love and hugs to your entire family.

Theresa

Link to comment
Share on other sites

Guest Phyllis

I am sorry you got such disappointing news. Trying to find alternative treatments is horrible especially when you read about them and then you find out there are all these strict guidelines and you feel like they are trying to write you off. Can't they do surgery on some of the tumors and maybe rfa to the lung tumors? Maybe once you get your strength back you could try more chemo. Don't get disacouraged there is always another plan to come up with.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.