in need of 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.

[Surveyor]

I’m sorry that you have not received more responses. I understand SCLC responds well to chemo-therapy in many cases. Why not try the chemo? It may extend his life and there are cases that have really turned around with chemo-therapy. At the same time, it will probably be hard on him, but it sounds like he is having a very hard time of it now! Chemo-therapy is his major hope. Radiation therapy could help the bone met to his pelvis and may help his other tumors. Find a doctor who will help him. God bless you, your FIL and your family.

[meredith]

Hi, I responded to this on another thread, but I'll do so again in case you didn't see it. Let me just say welcome.

First, he needs the pain nder control. Be aggressive if you have to achieve this. It can be done, and he might be more willing to give chemo a try if the pain is controlled.

It's hard to predict how your FIL might respond to chemo. He may tolerate it well or fairly well, and it may shrink his tumors, thus reducing his pain. Or he may not tolerate it well at all, and be very sick until the end. The only real way to know is to try chemo and ultimately that decision is up to him. Also, he should know that he can stop chemotherapy anytime he wants to. He is the patient, and it is his life, his treatment and his well-being, so if he can't tolerate the side effects, it can be stopped. It may not hurt to try--and chemo could very well shrink his tumors, reduce his pain and prolong his life. Even with mets, sclc patients sometimes respond completely to treatment and have no evidence of disease.

It is also possible for your FIL to have lower doses of chemo than what is "standard."

Best of wishes to you all.

[RU92]

My father's situation is very similar to you FIL. He was given chemo and radiation at the same time and this worked very well for him. Also, because he had other back problems, it was difficult to determine where the pain was coming from- his met or his herniated disks. He was given a strong steroid and this seemed to help his back pain as well. I would definitely push for the chemo, it works in 80% of the cases with SCLC, and my father was able to tolerate it well.

One last suggestion, be assertive with your FIL's care. If you are not an advocate for him, no one else will be. Learn all you can about LC, ask questions, and try to get him the best treatment possible. Best of luck with everything.

[Cindy RN]

If he is willing to try the chemo-go for it.

Pain control tho is a priority! If you hurt you don't want to fight. Help him to get what he needs.

Cindy

[RandyW]

I am sending you some links here to help with research ideas and questions.

Click On the Links to be redirected to the sites.

1) Blood Clots

A) http://www.nih.gov/news/pr/feb2003/nhlbi-24.htm

http://www.nfcr.org/Default.aspx?tabid= ... nkId=21648

2) Pain Management

A)http://www.lungcancer.org/health_care/focus_on_lc/symptom/depression.htm

B)http://www.cancer.org.au/documents/lungcancerGPcard.pdf

Now I am Not sure of too much else based on this post. Are his Doctors Oncologists or Primary Care Physicians? Does He have a Oncologist by chancce? Wha ttreatment are they discussing? There are mmembers here who have seriously beat the Drs odds on survival length of time! Hever let a Dr tell you how long you have to live cause they don't know. Make sure Your Dad has A Dr who will fight to get him the best treatment He can find available. There are so many factors I can not help with but with info I may be able to make reccomendations for questions and arguments.

Cancer Facilities in Buffalo Where Dad Is if I read the Post correctly and you all are in San Diego Correct?

1)http://www.chsbuffalo.org/

2)http://www.buffalocancer.com/default.html

I may not have answers but I can make suggestions and comments and try to help with things. Sorry tis is so long but i hope there is something here that will help you get this fight going fastere and recovery better. If I can Help PM Me, I'm always around 1 or 2 times a day.

[Guest fight4dan]

Thank you for the responses. Sadly,things appear to be gradually getting worse. As I previously stated, my FIL has a morphine pump to manage his pain. However, the hospital staff is not allowing time to see if the pump actually works. They are giving him pills whenever he asks. It seems that he does not know what he wants or needs. This is the same man that is asking for people that have been dead for 10 years. He also tried to bite my husband yesterday, when he was acting like a dog. My husband states that about 3 days ago, he became very loopy. He is saying the most off the wall things and then the next minute, he is lucid and able to talk for a few minutes. It is very difficult to watch (as my husband tells me every night on the phone). I got the opportunity to talk to him today on the phone and it made me cry. The Dr who put in the morphine pump came in to see my FIL yesterday. He stated that his loopyness could be one of 2 things: 1)drug interaction or 2) the cancer has moved to his brain. Then he stated to my husband, "your father is nearing the end and his days are numbered". So, that is where we stand. They completed another tx of rediation yesterday. They say that they can not take him to have a CT to check to see if the cancer is in his brain, because they don't want to move him. However, they can take him out of the bed, place him in a wheelchair, go over a bunch of bumps to another building and take him for radiation. Due to all the movement, he "needed" a "pain killer sucker" on the way back from radiation. It amazes me that they can not tell us whether or not the drugs are causeing him to act crazy or if it is the cancer. We are still waiting for him to be transfered to Roswell Park Cancer Center, but they stated that they do not have any open beds. I just can not shake how different he is acting from when I saw him just Last Thursday. Hopefully a bed will open at Roswell Park, before it is too late!!!! Thank-you for listening.

Does anyone have experience with someone nearing the end and acting loopy?..or do you think it is the drugs and he might have a chance?

[RandyW]

Opioid Side Effects: What They Are & How to Cope

A report from M. D. Anderson's Grand Rounds series on pain management.

There's no question about it -- opioid medications are by far the best medications for cancer-related pain. Although powerful drugs like opioids do have side effects, M. D. Anderson pain experts say most of these symptoms can be managed. "We're doing a lot better job of treating pain and creating rational pain management plans," says Larry Driver, M.D., clinical medical director of M. D. Anderson's Symptom Control and Palliative Care Center. "We take a proactive approach to treating the possible side effects of opioid medications."

Opioid medications work on specific receptors in the brain to decrease the sensation of pain. They include drugs like morphine, hydrocodone and hydromorphone. In most cases, opioids are administered orally, but other methods include transdermal, intravenous or epidural applications.

Central Nervous System: opioids can have a wide range of side effects on central nervous system (CNS) functions. "Opioid pain medications can either inhibit or excite the CNS," says Driver, "although inhibition is more common." Patients with depressed CNS functions may feel varying levels of drowsiness, lightheadedness, euphoria or dysphoria, or confusion. These symptoms can manifest themselves when first taking the medication, or when the dosage is increased. Decreasing the dosage or changing medications usually takes care of the problem. "We may sometimes add a psychostimulant like Ritalin to help counteract the symptoms," says Driver. "Those drugs have to be taken before 1:00 p.m. so they won't interfere with the patient's sleep/wake cycles."

If opioids excite CNS functions, it can result in side effects like hyperalgesia (extreme sensitivity to pain), myoclonus (involuntary jerking of muscles), or seizures, in rare cases. Again, treatment involves decreasing the dosage or switching to another drug. "Benzodiazepine drugs (Valium) might be prescribed along with the painkiller, but doctors have to be very careful with the dosage because of possible additive effects of the opioid and the other drug," says Driver.

I know how hard this is right now frompersonal experience and te pain of losing my wife to this disease. She was not loopy but addicted to the pain meds and Morphine shots that she was able to request when she got them. She passed pwacefully alone in her hospital room unexpectedly with out me by her side because we did not expect this to hppen at this time. I am so sorry to hear of Your Father in laws condition and downhill turn. Spend what time you alll can with him and try to keep as comfortable as possible. Cherish every Day and Pray for tomorrow to be a better Day. I will say a prayer for you. Let us know whatever we can help with and we are always here for anything you may need right now. If you want to vent and rage type away. Lots of shouldders to cry on and Ears to listen to you and compassion to be dispersed.

[Carleen]

It is so painful for me to remember the last few days/weeks as this is still so close for me.

But I did want to tell you that prior to going into the hospital and getting the high doses of pain meds my husband was having a few occassional moments where he would get confused. There were a few times in the last few days where he would say something, or thought I said something. I didn't want to scare him, even though I was scared, and I would just say no no honey, you were having a dream, you were only dreaming. Once we went into the hospital, he had much more of this and was often very confused. We would talk to him and explain things and he'd sit there trying to process it, but then say he just didn't understand what was going on. He just wished he knew what was going on around him and with him. It was so sad, it makes me cry just remembering the fear and anxiety it caused him.

So in short, the meds really compounded the confusion, but it really started in the days prior to the medication. And it didn't have to be caused by brain met involvement as my husband's brain mets hadn't grown any, and were so small as to not cause any symptoms. I was told it was all part of the dying process and the body shutting down, hormone and chemical changes due to slowing liver functions, lowering nutrient intake etc... etc...

[Poppie]

Hi, I can only speak from experience, but my Dads final days were almost identical to Carleens husbands.

About a week before he died (May 18th 06) he too started to talk about the strangest things, right in the middle of a normal conversation. We` re British, but suddenly out of nowhere, he started to talk about Bill Clinton!

I too think that this was part of the dying process, yet at the time, we just thought it was the drugs.

We fully expected Dad to come home from the hospital, even for a few months. It was such a shock when he died, especially since the day before we had been talking about my childhood and all the daft things we got up to.

You all need to make the most of whatever time he has, and if he does get stronger over the next few days, then maybe chemo would be an option.

Dad was so unlucky in that the chemo did absolutely nothing for him, despite him having sclc, but we saw many others at the hospital who really benefitted.

I think the most important thing is to get his pain under control and for him to be kept as comfortable as possible.