Ladyintheglen

Jake is now having possible mini seizures. Dr. is suggesting that he go on Dilantin if he has any more. Well he continues to have them but is afraid that if seizures are diagnosed that they will take away his license to drive. The seizures consist of tingling/throbbing in his fingers in his left hand and some numbness in his face. Absolutly no loss of any consciousness. Do any of you wise people have any info on this? We went to the cemetary to buy lots yesterday. What a horrible day!!!! Cheryl

Thank you all so very much. I appreciate every response I receive or will receive! There is one thing though. My husbands first diagnosis was small cell (a mistake). When we switched dr.'s and had another biopsy done (first one didn't even have enough tissue to diagnose cancer let alone what type) Jake was diagnosed NSCLC neuroendocrine carcinoma with mixed cell histiology. I guess that means he's got it all. There is extremely little information on this type of cancer. Cheryl[/u]

Oh ((((((Pat))))))and (((((Don))))), You dear sweet people. You have so much on your plates and yet take time out for my whining. I'm sorry I bothered you. Pat please .... what do I say. Oh how my hearts breaks for you!You and Brian have been and will continue to be in my prayers. Cheryl

Hello all, I am going to ask this hard question. You have all seen and heard many things that I have no clue about. Please advise me. Truthfully. Having the cancer spread so many places (brain, liver, kidney, and lymph nodes in the abdomen) in such a short amount of time.... Do I need to prepare myself??? Cheryl

I am SOOOOO PROUD of you for going back to school!!! YAY!!!! HOOORAY!!!!! GOOD FOR YOU!!! ATTA GIRL!!!! WAY TO GO!!! I am a GED Examiner and on the executive board of out local literacy volunteers and if there is one thing that can make me cheer (other than the obliteration of cancer) it is continuing education! Cheryl

Jake and I went to the neurosurgeon yesterday. We found out the results of his abdomen and pelvic CT. The cancer has also spread to his right kidney and definitely the lymph nodes. We are devestated. Gamma knife is scheduled for Dec. 6 for the brain mets. Jake is angry about this. He feels it is too long to wait. (They only do Gamma knife on Tuesdays.) This cancer spread to the brain, liver, kidney and lymph nodes in a matter of weeks! We didn't realize it would happen so quick. Morphine increased for pain. Please pray for us. Cheryl

Hello Sharon, We do need more info. That being said....this is how I am handling this wretched disease with my husband. I have told him from the start that I will do all the research that he needs so that he can make an informed decision about treatments. He doesn't want to know all the details about his cancer so I carry the details. I've told him that if he wants to know something, ask me, but don't ask unless he wants to know the truth. I will not lie to him. I have also told him that this is his battle. I will be right beside him, but he needs to make the battle plan. I think this helps him to have some kind of control in a world that makes him feel that his body is out of control. He has a choice to fight or if he chooses he can retreat for a time to gain strength. I will support whatever battle plan he sets. That includes if the time comes that he feels enough is enough. I will do whatever I need to do to make sure he is not in pain. Our doctors are fully aware of this and do not like my temper tantrums. These are my promises. This is our way of battle. Yours may be different from everyone else. That's ok. This is very personal. Some days your brother will feel defeated. Encourage him and support him. It is a tightwire balance. Love him and let him talk out his feelings. I know I have rambled a little bit here (ok alot) but you are sounding a little lost. Read what the other members have to say ( they are brilliant) and use what will work for your situation. We are all unique. You can do this. Cheryl

Hi (((((Pat))))), My prayers are with you. I can't imagine what you are going through right now. Unfortunately I will soon enough. Neuroendocrine is truly a beast. I am holding you both up in prayer as I have always done since I met you. We are strong and we can and will walk through this. God bless you both and I pray that Brian just needs to get a second wind to continue his gallant fight. Cheryl

Hello everyone! We were told yesterday that my husband is now stage IV. Two spots in the brain (1cm & 2cm) and six spots in the liver. He also has some enlarged lymph nodes in his abdomen that they think are causing severe back pain. I had the Onc. order some morphine (low dose) last night and it hasn't helped. Husband was up all night in pain. We have to go for a CT of the abdomen to see what else may be going on. Gamma Knife will be done soon on the brain mets. What will happen from here? Husbands mood has lifted because I told him I was leaving over the weekend....now this. I hate this $%&*#@% cancer!!!!!! SCREAM!!!!!!!! Cheryl

Thank you so much for your support once again! What ever would I do with out all of you! Hubby will be getting repeat chest CT and brain MRI in November. Hubby had x-ray and was treated for pneumonia 4 weeks ago because local radiologist thought that's what the spot on the lung was. CT 3 weeks later showed same spot-no change. RO told me to watch for symptoms and report to him immediately for the brain. I just want to scream, yell, throw things and hit somebody. Whine and cheese anyone??? Cheryl

Hello Everyone, I know I don't post very often. I want to be able to encourage people but.... lately I'm just feeling like things just suck toilet water! We went for chest CT and brain MRI. (First ones since chemo and radiation.) New spot on lung. Of course it's not a small spot. RC did tell us that it could be inflamation but reading his tone and look on his face I don't think he believed it. There are also 3 small spots on the brain that are suspicious. RC said may be nothing (same tone and look). So just to make sure I was reading him correctly...I asked him about the PCI clinical trial he was so anxious for my husband to participate in at our last appointment (July). He said we can't do it right now. Well, that answered that question...probable brain mets. It is so hard to get questions through and answers when my husband has stated that he doesn't want the information and yet if I ask to speak to the Dr. alone hubby won't leave. Wah-Wah-Wah. I guess I should start serving cheese with my whine. Cheryl

Hello Ralph! I'm glad to hear that you have a Dr. that you trust and that he gives you the information the way that you want to hear it. FYI: You may be able to utilize him to speak with other Dr.'s that are not handling things the way that you want. On the radiation issue and what may be on the way in the order of side effects: My husband had 35 treatments. He did develop a sore esophagus. We used BMX (benadryl,maalox,xylocaine) and Carafate to help him through it. Some days he wanted softer food but most days he ate what he wanted (or maybe a little less). We also had pain meds. I think my best advice is that if you begin to feel any symptoms let the rad. onc. know immediately. Ask him to give you the prescription for what may be needed ahead of time. (It helped us to know that we were prepared.) Call your pharmacy to make sure that they have the medication on hand and let them know that you are going through radiation to the chest. (BMX isn't a common order.) Our pharmacy made sure they had plenty on hand. If the medication isn't working well let the Dr. know and don't accept the statement "Well, you have to expect to have pain with this." Your response should be "Well, with all the medications aimed at relieving pain I expect you to order something to help me." Granted you may have to go through some trial and error but you should have some relief. I pray that you breeze through your treatments with minimal discomfort. Cheryl

My prayers are with you. Praying for a miracle and the path to find a warm, caring bio-dad. Cheryl

Prayers are being sent. Stay strong. We are all here for you. Cheryl

Dear Las, I don't know what you should or should not expect. I have not gone through it. I would think that Hospice nurses would be able to give you some idea. I just wanted to say that I am so very sorry that you are going through this. My prayers are with you and your family. Cheryl

Darlene, Please do ask your Dr. for a reccommendation of another Dr. When I've been in this spot of needing a new Dr. I always tell my Dr. "Don't send me to an a#$h$%le." This is just another chapter. Don't try to read ahead. You always succeed at the end. Sending prayers your way. Cheryl

A marching band, ticker tape parade and fireworks are being sent to help celebrate!!! Cheryl

I am so sorry you are going through this. My prayers are with you and your family. What ever you are feeling is "normal". Allow yourself to feel what you are feeling this moment. When it is time for you to feel differently---you will. This is not the time to worry about if what you are feeling is "normal or right". We all go down this treacherous road in our own way. Sometimes it matches up with "normal" and sometimes it doesn't. Regardless of whether it matches or not---it is the right way for you. Cheryl

My husband just finished radiation (35 tx). His Dr. gave him a prescription for Miles Magic also called BMX. It is equal parts of Benedryl, Maalox and Xylocaine. He takes 1 teaspoon 4 X/day. Before meals and at bedtime. He also takes liquid Carafate. This combo really seems to help. When the pain is bad despite this combo we have Lortabs on hand. Please have your family discuss this with the dr. To make your BIL go through this unmedicated is cruel. Good Luck! Cheryl

My husband has also been approached about the PCI trial. He is just finishing up treatment and we don't even know where we stand with the lung cancer. His last scan showed no change. The trial is definitely for NCLC. Cheryl

Thank you to everyone who is trying to help me with this problem. To update everyone: Jake just finished with radiation to the chest (35 tx) and will be receiving his last chemo (carbo and etopiside) on Aug. 8,9 10. He does not take steroids. Rad. onc. wants him to go into a clinical trial for prophylactic cranial radiation. Jake is starting to feel the cancer symptoms again. ( He informed me after encouraging me to visit my daughter and son in law in Japan. Non-refundable tickets!) He doesn't talk to me about what he is feeling. I guess he thinks that men don't talk about such things or maybe he thinks that he is protecting me from it. I'm glad the trust issue was brought up. I recently told Jake that I don't trust him right now. I pray that the trust will come back. Jake is refusing to take meds to help with the anger. (It would be embarrassing.) So I guess I just have to try to keep going through it. Thank you again for all the support, Cheryl

Val, Leslie has put it in a nutshell perfectly. Please listen to this wise woman. To Leslie....BRAVO!!!! Cheryl

Hubby had a brain scan in March - clear. No steroids. He is receiving Etopiside and Carboplatin for chemo and is having radiation to the chest. thank you so much for your quick response. Cheryl

I'm sorry to be posting this but I am at my wits end and thought maybe some one would have some advice. My husband goes into a rage over the littlest things. I don't know how much more of this I can take. I love him dearly and want to help him through this. All the name calling and hatred is starting to destroy me. He is verbally and emotionally abusive. He even came chest to chest with me during one arguement. Is this normal? Cheryl

((((Val)))) I just wanted to add my 2 cents here as a mother to 6 wonderful adult children. When we received my husbands diagnosis and all the crazies started happening at this house I would sometimes talk to my children about what was happening on those bad days. They would just happen to call during a crying jag. After I told them how I was feeling I would always apologize for burdening them. You see I am the mother and they are the children. I am supposed to take care of them and protect them. Not the other way around. I know that they don't feel this way and have told me. But I have trouble with this role reversal. You have just given me a new perspective. Thank you. I will try to allow my children to help more. But not too much more. Take the break and do special things with your Mom. Do something with her that you used to do as a child that made her smile. I have 2 boys that used to sing "Mr. Sandman" to me when they were very little. (3 & 4 yrs. old) It always made me smile and brought great joy because they were so cute. Every once in a while one of them will start singing it. (Mind you they are grown men now.) My heart leaps and I can see them plain as day as small children singing it. I guess what I am trying to tell you here is there are many things you can do for mom that only you can do. No one can take that from you. Sorry for the rambling. Lots of love, hugs and prayers are being sent. Cheryl