More questions and need for direction

[Guest fight4dan]

My FIL has stage 4 small cell lung cancer. For those of you who have the same diagonosis or know some one who does..please send your comments and suggestions. As I stated in an earlier post, he has endured a great deal of pain and now has the morphine pump in his side that automatically injects the drugs in his spine. However, he still has a great deal of pain from a blood clot that formed on 7/7/06, in his right leg. This is the same side of the body that the main tumor is located in his pelvis bone (7-8cm). There are other tumors in his adreanal glands and one on his lung that they stated there is no treatment for. They are giving him cumadin (sp)and blood thinners, but the clot is still there and his leg swells. I heard about an umbrella procedure that is supposed to work to stop the clot from going into his lung and killing him, but they stated that it is not an appropriate procedure in his case. I am just looking for some answers that are going to guide my family in the right direction. I have a husband who lives with me here in san Diego, who currently extended his trip another week and can't leave my FIN, his fa..because he is afraid he will not be there when his adad dies. I need to know how to act, what lies ahead and should I be hopeful. I was in Buffalo visiting my FIL until 7/13/06 and he was in pain. He is in a hospital bed and has been since 6/25/06. He walked into the hospital and now has to call for help to be moved, even the slightest bit in the bed. He is also addicted to the opiates that they continue to give him, despite the fact that he has the morphine pump. its like they have written him off already. Some of the the doctors say do the chemo, others say don't. We honestly do not know what to do! Will the chemo extend his life or ruin what little time he may have left. What would you all do? Please be honest and ask me more questions if needed to provide the best answer. We are trying to get him transferred to a cancer hospital, but we are being told that he is not stable enough to being transferred. Aside from the blood clot and the pain that it is causing..he states that he is feeling okay. My husband is attempting to set up a meeting with the doctors and your input and suggestions are greatly appreciated. We want my FIL home and remain hopeful that a miracle will happen. Thank you dearly for your support and honesty.

[EastCoastLadi]

Have you tried Sloan Kettering? for your FIL, I know Buffalo isn't near NYC, but perhaps he needs more experienced oncs. I think one of the main issues here seems to be the blood clot, its sounds as if ( and I really don't know ) but they want to deal w/ that because of how extensive he is w/ the cancer.

I can tell you that even w/ extensive sclc it can and does quite often respond to chemo. but if they are talking about the most effective chemo, or what my husbands' onc puts it is "the gold standard" it would be cisplastin and etoposide, which definitely helped my husband.

But the only thing about that chemo combo. and other chemos is that they beat the u know what out of your body. Some people literally can not take it,

this may be the thinking of your FILs' drs.

But they can also try other types of chemo. that perhaps while not the "gold standard", could at least help him a little bit.

What you have to know, if you don't already know is that small cell vs large cell is seen as a sistemic type of cancer, liken it to a leukemia, you can treat one problem area, but it is like putting a band-aid on a gaping wound. You have to see if your FIL can tolerate any agressive treatment.

My husband is in relatively great shape, aside from the cancer so his onc. have thrown alot at him, and he has been able for the most part to take it.

But if you want to educate yourself more about sclc, check out the Nat'l Institute for Health, of the Lung Cancer Association to begin with. Remember knowledge is power.

Again, I am hoping for the best for your FIL

Grace

[joanie55]

Unfortunately, I don't know much about SCLC, as I have NSCLC, but I am a patient at Sloan Kettering and if there is any way I can be of help, please feel free to pm me.

Joan

[john]

As EastCoastLadi said maybe try somewhere else.

Roswell cancer center in Buffalo is a NCI designated center.

Sometimes Low molecular weight herapin (LMWH) is used instead of coumadin. Coumadin I heard is sometimes hard to use since it is affected by what you eat.

LMWH does not have the same problems as cumadin but it is more expensive and it is given by an injection

There are different chemos that may have less side effects that may prolong life and also help quality of life

Maybe Oral HYCAMTIN (topotecan) will be tried?

Of course someone has to ask your FIL what he wants as far as treatment goes

Take care

[Ry]

Roswell sounds like your best bet. You need to get him somewhere specialized and see what they offer as a treatment plan. Small cell responds well to chemo-let us know how things go.

Rochelle

[Connie B]

I'm very sorry you have the need to be here, but I am glad you found us.

I don't have Small Cell either, but we do have a Small Cell Forum on this board, and you might find some helpful information on that forum as well.

Or maybe in the Caregivers Forum. I just want you to know there are places to go check here for helpful information as well as asking us. We are always willing to help, but I just wanted to give you a little extra help.

[meredith]

I am sorry to hear this.

First I would suggest that those doctors get his pain under control! Be very aggressive if you have to, don't let them "write off" your FIL. If current drugs aren't working, have them try new ones or maybe even visit pain management specialists. I think control of pain makes patients more willing to fight. AT the very least, they can give him comfort and peace of mind.

Second, I stress that I do not have small cell lung cancer, but have small cell cancer of the cervix that is treated with the same chemotherapies as sclc. I had a very large 9 cm tumor extending into my pelvis and I was in a lot of pain--mostly severe back pain. I was treated with cisplatin and etoposide (considered first line treatment for those with sclc), and after the first round my tumor shrank dramatically and the pain was greatly reduced. Small cell cancers tend to respond very well to chemotherapy.

Having said that, the cisplatin/etoposide can be difficult to tolerate. However, I've heard that carboplatin and etoposide can be just as effective, but with fewer serious side effects. I think it's also possible to have only etoposide, even the pill version, to help shrink the tumors. Chemo, although unpleasant, is often used to alleviate pain caused from tumors. I guess it couldn't hurt to ask the doctors about these options.

Good luck. I'm hoping for the best for you all.

[marym]

I agree with the specialized treatment at a cancer institute. But, I also think getting the pain under control is the first step. You should not be worried about addiction. If opiates are used for pain control - addiction does not occur.

If your FIL wants to go the chemo route, then insist that it be tried. If he has a hard time handling the chemo, try another. Several are less harsh. Although I do not have SCLC, I am also inoperable, stage IV. I ws diagnosed 15 months ago and have had radiation treatment , radio surgery and I'm just starting a 3rd chemo. Nothing has been very difficult and 99% of the time, I live the same normal life I did before diagnosis.

I guess no matter what, these times are very difficult for the family. I know I feel worse for my family than I do for myself - this is one of those diseases that the whole family gets.

Best wishes to all of you.

Mary