Question about Clinical Trials

Hi All,

Can you answer this question. Yesterday, at Dana Farber we opted out of a clinical trial because of increased pain in his back (ABT-263). Both onc. agreed that this was the right thing to do but they kept reminding us that we couldn't get back ona trial again? I know we can't get back on this one but down the road there may be others?? We start radiation next week and the onc. kept saying pallitive only and wouldn't even talk about chemo MAYBE after the rad.
I thought Dana Farber was one of the best. The mets are spots?? in his lower spine ( not neurological) and no were else. Brain, liver are clean.

I am in a deep depression and couldn't make work today and so is Sam. I may even need to be hospitalized and don't know who can help me out with Sam. What a mess...

Also, he hasn't gone to the bathroom since Sat. and the onc. told us to get magn. citrate since the Miralax didn't work. Any ideas? It's because of the increase in pain meds.

Thanks for any help,
Marie

By AliceL
Posted October 21, 2009 at 10:11 pm
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I am so sorry you are having such a time. I can't see why not being in one trial would preclude being in others. Many times a person is not eligible for one at a particular time, but can join a trial at a later date if there is one that is appropriate. Next time you talk to the doctors you might want to make them clarify just exactly what they meant. I don't know why doctors can't take a minute and make sure their patients understand what they've said.

As for magnesium citrate, that should do it. You can get it at any pharmacy or drug store. I've had it for surgery. It's similar to the stuff they make you drink for a colonoscopy, but not as abrasive.

God Bless,
Alice

By cuddles53
Posted October 21, 2009 at 11:25 pm
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Mag citrate is a powerful laxative, I think this should do the trick. I am worried about you too here, it sounds as if you might haver to be hospitalized, is this for depression?
You have so much on your plate right now don't you? do you have any family that can come in and help? or friends, think about friends who can help. I am having some worries myself right now too, about my person who is my rock, and takes care of me, he is having back problems, and I am afraid will need some surgery, soIam scared, and we really do not have a good support system for others to come help with any thing. but, I am thinking of some good friends who have said in the past is there anything I can do to help. So I am thinking yes maybe there is. Try and think in your mind of all of the people who have come to visit, or called, and asked if they could help. Maybe now is the time to take them up on it.
Dont' get yourself all tired out, and weary, and now you be sick. You are this rock for him,. I know you need your time for yourself, but just know you have a friend here.
As far as the oncologist radiation people they want to get those spots down real small, and then they will see what chemo will also do to help. Some of them only will work on it one step at a time, leave it to them to figure it all out. it will all work out in the end okay. Right now you are the concern as well. Without you in the picture doing good all is not good. I am praying for you to get it together for yourself. If it means you have to check in and get some help, then you need to go for it, and do it for you. You must be under so much stress, and tension worrying about him, and not about you. I am so sorry for that.
God bless Sandy

By Chum
Posted October 22, 2009 at 8:09 am
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Each trial has its own criteria for inclusion. It is likely that the combination of treatments and symptoms is such that he would have a hard time qualifying. That being said, it never hurts to ask others - there are many "best" places. Check out another comprehensive cancer center - M.D. Anderson and Johns Hopkins are the "best" for some, though my "favorite" is Memorial Sloan-Kettering.

Courage

Chum

By gpawelski
Posted October 22, 2009 at 10:35 am
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Large academic cancer institutions that are soulfully involved in clinical trials and may feel a subtle pull towards getting patients involved in those trials. Some researchers may discourage patient empowerment so they can call the shots through these trials.

There's a lot of young oncologists that are encouraged to publish. Their promotion at academic centers is dependent on publication. So many of them may be encouraged to put together a protocol in which they take new drugs and treat a small number of patients with a certain disease in a phase II trial.

Some of these researchers seem to have a readiness to believe that the clinical trial is more reasonable for the patient and other options do not offer an advantage.

By Willsmarie
Posted October 22, 2009 at 12:08 pm
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Hi Alice,

I don't know why doctors do and say what they do-either.
Gosh, if you ask more than one question, they get their feathers ruffled.

I did pick up the mag citrate but I didn't give him the whole 10 ounces because he had been taking senna plus miralax, but honestly I wish I had. He was miserable all night and it didn't "work" all that great, I believe because I didn't give him all just about 4 ounces.
Will ask Sam to drink the rest tonight.
Thank you very much for responding.

-Marie

By AliceL
Posted October 22, 2009 at 12:17 pm
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You are right, I doubt that 4 oz would do much. The few times I've taken it I drank the whole bottle. If he is really still miserable, you might want to pick up a new bottle to make sure he has the whole 10oz. I sure hope he is feeling better by tomorrow.

By Willsmarie
Posted October 22, 2009 at 12:46 pm
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Hi Sandy,

You hit the nail on the head. When someone is diagnosed with this disease or any disease for that matter, if you have a good support system - that's half the battle. I don't. The answers that I have received from family and I haven't asked for much is "sure, only on Friday or only in the morning or let me see, I have a dance class maybe I can switch. Are you kidding !!me? I need help on certain days not on their days. I have been asked many times to help out a few friends, the answer I gave was "yes, where and when do you need me". Honestly, you'd think I was asking them to give their jobs up or heaven forbid- money.
No, I need someone to stop in and check on Sam, not every single day but a couple times a week and they don't have to stay long (15 min or so). Money - never asked anyone for it - but gave it to whomever asked me with no strings attached. My mother always reminded me if you do something for someone don't ever put any strings on it - just do it and forget it,don't even talk about it.

I know if my mother was still alive she would say "Marie - that's just human nature". But people just get to me.

I'm taking your advice and a few neighbors have said if I needed anything to knock on their door, So I'm going to knock.

My heath is lousy. I just got back from the doctor for myself (went on my lunch hour) and he said I need an ultrasound for a lump under my rib. If it is clear, I will then need a CT scan of my chest and stomach. I also was a previous smoker. It may be nothing at all, but when I called these family members and asked them IF I should be hospitalized for a few days could they somehow watch over Sam for me. NO. Call social services. I am dumbfounded. I will say this, I have 3 brothers (one passed away very young) the one with cancer is the one helping me out. He is going to take Sam to the rad. for his treatments and it's local we don't have to go to Boston (1-1/2 hour drive). For this I am so grateful.

Sandy,

Start knocking on your doors too. There are good people who would like to help - I have to believe that.

Well, I got all that out. Stress and worrying about Sam, isn't helping, but I have to work, not only for the money but my company has great insurance and I want to make sure Sam has the best. I haven't seen a bill since he got sick in March 09.

Regards
Marie

By cuddles53
Posted October 22, 2009 at 1:05 pm
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Good luck Marie,
I pray you get the help you need,and you stay healthy. Hope fully it is nothing wrong.
Take care and gopd bless.
Sandy

By Willsmarie
Posted October 22, 2009 at 8:48 pm
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HI,

Thanks for responding. You always have so much valuable knowledge that you share with all. I really appreciate it.

Regard,
Marie

By Boopster
Posted October 23, 2009 at 2:01 pm
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Marie,

I just agreed to a clinical trial yesterday. After a thorough discussion about three options with my oncologist, we agreed on what we felt would be the best for my type of NSCLC (BAC). One thing about which I was assured was that if I elected to not continue with this option, I would be eligible for others.

Hang in there,

Bob

By tyler2
Posted October 23, 2009 at 9:19 pm
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So sorry to hear of your difficulties. Hope you're able to get some sleep yourself, and if possible, try getting away to do something for yourself (bet you forgot that was possible). When my husband's sleep disturbance was particularly bad, I used Melatonin (natural sleep aid, 5mg, no bad side effects that I could find unless you have an auto immune related disease).

I share your disillusionment with Dana Farber. Friends urged us to go there because they knew people who thought it was great. Apparently they were among the pioneers in developing chemotherapy regimes. My private opinion is they are probably great if you have breast cancer but so far I'm not impressed with the treatment for lung cancer. Like you, I find the oncologist seems reluctant to give me satisfying answers to my questions.

At least for NSCLC there is a nurse (Kitty) available on the phone to answer questions-especially about side effects. I've certainly found her to be helpful (probably the only positive person I've come across there). We're thinking of looking for other options, either trying to switch oncologists or trying to find a treatment center that welcomes questioning people! Part of the problem is- how do you "interview" oncologists etc. to find one that works for you?

Other options for you, on the personal/behavoral side, could be to talk to the DF social worker. She's pretty busy but will eventually call you back and can offer some suggestions over the phone without seeing you in person.

Best of luck & please let me know what happens.
Tyler

By Willsmarie
Posted October 25, 2009 at 4:00 pm
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Hi Tyler,

I have met Kitty and talked to her quite a few times. Very nice person and she has helped me with questions and so on......

If you find another hospital or great onc. would you let me know. I'm in the Chelmsford area. At first we went to an onc. in Lowell, honestly this onc. didn't give a hoot about Sam, he was in severe pain (at that time) and he was making arrangements for tests 4 weeks down the road, believe me we didn't have that kind of time.
The surgeon at B&W's saw us on a Fri. and all tests were ordered for Mon. and biopsy right away. Sam's PCP got us in with this particular onc. because she said she wanted Sam to have the best. They really don't answer our questions and when I asked him what his plan was down the road all they say is we'll talk about it then. ( All onc. has some type of plan),

Anyway, we are getting rad. at the new Lowell Cancer Center but not Chemo. We have been dealing with this nightmare since 4/09 and at DF.

I don't know how to interview onc.? I was thinking of sending all Sam's records to Sloan Kettering and see if the concur with DF.

I'll keep you posted. I have a friend who is a nurse and I'm going to call her and ask her opinion of this particular onc. She works in the field.

Marie

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