Carleen

Fantastic!!!! Congratulations Rhonda, 5 years and many more coming!

Congratulations Terrie on 4 Years. I will be praying for 4 more, and even for 40 more. God Bless

Chemo is so hard on the red and white blood cells, as well as platelets. Bruising can also be a sign of low Red blood cells (I only know this because I bruise very easily, I usually wake up with a new bruise every morning from sleeping) and that is from anemia or low red blood cells. As far as dietary things to help, I can't think of any that could counter act the effects of chemo. The only thing I can think of is that iron aids in the production of red cells so make sure you are getting enough iron. Will say prayers that all goes well with your blood tests, and that it doesn't delay your treatment.

(((Randy))) I'm sorry sweetie. I understand. I HATE this F@(k!ng S}!T $#$&* $@#U#$ A$$f(){$#$ Disease!

Keith had both Carboplatin and Cisplatin. He had the Cisplatin first with CPT-11, and then switched to Carboplatin VP-16 after developing ringing in the ears and hearing issues. We were told they were similar with similar efficiencies. However, what needs to also be considered in how two drugs interact with each other. It may be that the combination of Cisplatin VP-16 is more effective than Carbo VP-16. And Carbo & Taxol is a better combination than Cisplatin Taxol. The idea of dual chemo agents is to attach the cancer with two drugs that kill the cells in different phases of growth and replication and different ways. Cisplatin was by far the harder of the two drugs to tolerate, with more side effects.

(((Cindy))) I feel your pain, and I understand. No advice, just love being sent to you.

Kelly I know what it is like to feel the blues you are going through, and not know what to say. Keith used to say he was "sick of being tired, and tired of being sick" And I know there were times where he grappled with whether or not he wanted to do more chemo. But that never once equated with not wanting to fight for life. What I learned was that at those times, the thing that boosted his strength the most was not words that promised better times, or stories of hope, but simply words of love. I'd tell him how much I loved him, and how I would always be there to help him through whatever he went through. I would never let him go through it alone and it was not a burden. I loved him, I was thankful for him, and he made my life complete. Just being reminded of what it was he was fighting for usually gave him the determination and energy to get back up and hit this head on. Just tell your mom how much you love her, and let her know you will always be there with her in this fight. Although she is the one being put through the ringer, you are standing at her side and your heart aches with her.

Hi Barbara, I think I can help a little with your question on Neuroendocrine pathology. My husband had Atypical Carcinoid, which was a neuroendocrine cancer. Also, those on this site that have small Cell lung cancer (SCLC) are also neuroendocrine pathologies. There are actually different aggressive traits to these classifications of cells also in a 4 level classification. SCLC is considered the most aggressive of neuroendocrine tumors. On the up side, it is also very responsive to chemo and does show dramatic shrinkage. My husband has a level 3 aggression. It moved rapidly, not as rapid as SCLC, but wasn't very responsive to treatment. Pathology traits continues to a level 1 which is Large Cell Carcinoid which is very slow growing, but doesn't react to chemo hardly at all, radiation works better for this type. What your husband has is NSCLC, which is generally a lower aggression, slower growing cancer. Although Neuroendocrine features could mean a slightly more aggressive behavior (or maybe not), it doesn't mean that it will be advancing uncontrollably. If it gives you any idea of what I am talking about, my husband's neuroendocrine cells were originally diagnosed as SCLC because they were so aggressive. Although his diagnosis was finally clarified they said that he was right on the border of a 3/4 aggression scale. They gave him a 9 month prognosis with that.... He battled and fought this cancer for 3 years 3 months and 10 day. His quality of life was wonderful until up until the last couple of weeks; but before then he worked full time, played golf, played his drums, laughed and loved. We could tear ourselves apart trying to predict what all these terms and diagnosis' mean. But in truth, not even the doctors can tell you exactly what they mean to your husband as an individual. He may respond well to a particular chemo and do great, go into remission. I guess, all we can do is Hope and pray for the best, prepare for the worse, and live each day cherishing and enjoying today and this moment.

Bill, I have a friend who is a computer genius. I mentioned to him that I have one last phone message from Keith that I wanted to somehow save. He said he could transfer it to CD, so I will see how it is he does this and get back to you. Carleen

I am so sorry for you loss.

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...

Not much to add, but would also like to say that if you and your husband would feel more peace of mind knowing you are being proactive and aggressive with the cancer, and he is a strong active guy who can fight with determination and strength of will, then go for the chemo. There is nothing anywhere that says once you start a cycle of treatment that you have to finish it. You can try the chemo, and if your husband starts to feel too poorly from side effects, or his blood counts reacts badly you can always stop immediately and do nothing further or try a less aggressive treatment or clinical trial targeted therapy. Nothing ventured nothing gained. Live life leaving no room for regrets and "what if's". (my own personal motto). you are in my prayers Carleen

Adding my prayers to the list.

I agree, contact the doctor. I don't know all the side effects of decadron, but I've never heard of it causing bone pain. It is a steroid that also works as an anti-inflammatory. It really shouldn't cause bone pain. Even if it is, the doc should know so he can fix it. I will be praying for you guys.

My husband started having hearing problems with Cisplatin too. They did switch him to Carboplatin which is also platinum based drug but doesn't have the ear side effects as much as cisplatin. The carboplatin we were told was just as aggressive and effective as Cisplatin. Also, we were told the problems he had would be permanent, slowly after we switched of of Cisplatin things started to improve. He still had a lot of ringing in the ears, but the overall hearing got a lot better. Only occassionally did he have ask me to to repeat myself.

Boy did I love those Da Nile visits. I miss them. Anyway, I will keep you in my prayers. Remember that statistics are wrong and you are unique. I think everyone here would agree that you are pretty unique, such a great sense of humor . Originally my husband was given 9 months with treatment. He lived for 3 years 3 months and 10 days. So Ry is right, cancer grows slower in cute men. I think we have enough cases that can prove that theory. I pray your new treatment works miracles. God Bless

I'm sorry Joanie, I hope your onc has come up with a new plan of attack that you are both comfortable with. Keith always followed his radiations with chemo, but only reverted back to a previously tried one when all other options were exhausted and after 2+ years had passed since being on it originally. Have you asked your onc about Tarceva. I've been reading a bit lately that Tarceva seems to be having good results when following Avastin when the Avastin stops being effective. I will keep you in my prayers Carleen

Sorry about your sister. There are many different options for SCLC, in addition to the standard protocols which generally start with one of the platinum based chemos, and a second agent such as Etoposide or CPT-11, there are also a number of clinical trials available for SCLC. I've attached a link to the government clinical trial website with results for small cell. Also, there are so many members here with small cell. Feel free to read through the different forums and look at the bottom of peoples posts. Most tell what treatments they've done and which ones were successful. There are so people here with SCLC that are fighting and beating this. Hold onto hope, your sister is young and strong and can battle this aggressively. http://www.clinicaltrials.gov/ct/search?term=small+cell+lung+cancer&submit=Search God Bless, Carleen

Hi Dumpy (boy, it's uncomfortable calling anyone dumpy, but hey what the heck I look and feel pretty dumpy these days too ) You should never feel bad about venting. We all do it here from time to time. Some of us (like me) do it more than others. There are times in this journey where you will be on the upswing and be able to encourage others, and then there are the downturns that require screaming yelling and sharing. That is what a support community is about. Sharing the good and the bad. Yes, you have been hit with a lot, and you do deserve to vent and feel like you've been abused and that this is unfair. No one should have to EVER experience cancer; and especially not with more than one of their loved ones. It sucks. People lately have tried to tell me that "God never gives us more than we can handle", but I have to tell you I don't believe it. In the past month I've lost my true love and soulmate to LC which is consuming my heart and soul with grief, my aunt passed away from Ovarian cancer the same day as my husband's funeral, my uncle was diagnosed with SCLC 2 weeks prior to my husband's passing and was given only a few weeks to live, I had a miscarriage last week of the child that my husband wanted so badly and I prayed for so hard to have a piece of him forever, Saturday my brother in law was shipped out for 2 years of active duty in Kosovo, and I just found out that my husband's only form of employee Life insurance, a measly 10K, is not eligible for payout because he wasn't technically a full time employee at the time of his death, so there is nothing to help pay the massive funeral bills. I tell you all this not to compare, or say poor me, but to show you that somehow no matter how sh!tty life gets, we still breath in and out and somehow go on one more day. There is no way, God could expect one person to handle this, or cope with this, what he expects is that we kick, cry, scream, cry, fight, cry, and somehow survive. God does sometimes give us more than we can handle, it is just that hopefully when he does it, he also leads us to people who will help share the burden. That is what LCSC website is about... sharing the burden that would be otherwise too great for any of us to bear alone. I pray for you Dumpy and your family. God Bless Carleen

Tina I am so sorry.

Welcome, I'm sorry you and your family are going through this cancer nightmare. Although my husband didn't have SCLC, he did have Atypical Carcinoid LC with small cell features which is treated just like SCLC only it doesn't react as well to chemo. I agree 100% with Don's comment, in fact he wrote exactly what I was going to say... Hope for the best, but prepare for the worst. That being said, I'd like to help you all I can in your search for direction. But I caution that my view comes from someone whose husband and true love recently passed away. To me, I disagree with others who are being so optimistic. Your FIL does have a grave illness. Athough it is one that responds well to chemo, from what I've read from your posts there are a few doctors unwilling to even try chemo because your FIL's overall condition may be too weak for it. Chemo is a great reason to hope, but it is very difficult on the body. I hope that he is able to tolerate chemo, and possibly they could consider starting with a low dose single agent chemo until his strength builds back up enough for more aggressive. My uncle did that, he was given 2 weeks to live because of his overall state, but they gave him low dose Topetecan and as his cancer shrank he was able to tolerate higher doses and now they give him to the end of the year. But then again, doctors don't really know dates and times. What scares me about your FIL's condition is that he is not eating, and getting weaker. There can be a couple of causes for this. Usually when on chemo, a person stops eating because of nausea or bad tastes, but your FIL hasn't had treatment yet. It also could be from the medication, he is just too sleepy to eat and the medication is making him weak and drowsy. But also, loss of appetite is also one of the things that happens as the body starts to shut down during the dying process. Sleeping more can also be caused by higher doses of pain medication, but is also one of the things that happens close to the end. There is no way of knowing exactly what is going on with him for sure; no one will ever know when our time is up. I guess if your husband and MIL wouldn't object, I'd frankly ask your FIL's oncologist what is going on with him in their opinion. Get all the information before making a decision. I know that your job is important, especially if your husband isn't working. You need the income and have to protect your family. But that being said, the most important thing in life is the people we love. Money will always come and go, but love is eternal. It sounds like your husband really is struggling and needs/wants your support. Your FIL very well may be in the dying process. He may not. You have to ask yourself what would you regret more... Taking time off of work prematurely and having your FIL live and you have to go back and catch up work, be short on pay, and possibly have to take off again at a later date; or would you really regret more if you didn't take off and your FIL passed and you were not there to be supportive to your husband MIL and FIL. I say this because my personal policy on life with my husband was that I never wanted to regret anything when it came to him. I may be financially ruined now that he is gone, but I regret none of it, I wouldn't have denied him anything I loved him that much. I would do it all the same, I'd never leave his side, I'd still have missed all the work I did, have bought him all the toys he loved, and put him first in every action thought and deed. I guess only you can answer the question as to what to do. Look in your heart.

I win the prize for easy. My name IS Carleen.

Congratulations Kasey!!!! That is great. May you and NED now a long and happy relationship (I know Fred will never be jealous of NED)

Darrell I am sorry about the recent developments. I love your attitude though, don't ever let this monster get you down. Only when it has robbed you of your spirit and your will to fight has it won. I found this information on various treatment options for bone metastasis, and also found that the pelvis is one of the more common areas with SCLC. http://www.lungcanceronline.org/treatment-mets/BONE/bone.html#brainmetstherapies I know that you have had radiation already to the area, but it looks like you could also try radiopharmacology. Keith did a clinical trial that was in that realm where they radiate a drug (in Keith's case a hormone) that is attracted to your particular met, and then inject it so the radiation is absorbed directly into the met and not damaging surrounding tissue. For bone mets Strontium-89 (Metastron) and samarium-153 (Quadramet) are drugs that are often used. Also, radiofrequency abolation is also available for bone mets that have already had radiation. I've also attached the link to the available clinical trials for recurrent SCLC, and there is a trial in there for zometa for bone metastatis. http://www.cancer.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=2468246&sort=4&page=1&batchsize=10 Enjoy your trip to the mountains. Much love Carleen

Great news Don & Lucie, just wonderful. I am so happy for you both. Please spoil yourselves rotten in celebration. You so deserve to rejoice.