S. Jane

My Dad, Chick, regrets having the PCI so much. He is often tired (though was just taken off anti depressants and anti anxiety meds and has improved) and is very dizzy. Complains that inside his head is not clear. Has to stop moving when he climbs the stairs to get his balance. Can't bend over to pick up something without losing his balance. At first the doctor said this would clear up in 2 months. We have reached that, and if anything it is worse. Now the doctor says it could last for six months, and privately told my Mother that if it did, it would last for the rest of his life. I have not read of any one else having this major reaction to PCI! I even went through the archives to see if anyone did! Seeing my Dad so discouraged and depressed has been difficult. I know I've read so many positive reasons to get PCI, but this side effect is dibiliatating and the quality of my Dad's life has diminished so much so that he will refuse future treatment if/when the cancer returns. And final update, there was something sited on his lungs and the doctor is treating him for pneumonia, but will do another CAT scan late August to see if it is the cancer returning. This disease is horrible and no one deserves the pain and suffering that goes along with it. Love, Jane

Thanks David C and Elaine. I'll pass on the information you gave me David, and hope he will contact the doctor. It is the squeaky wheel that gets listened to, and I wish my Dad wouldn't be so quiet. Jane

Thank you for that. As I have tears in my eyes so glad that someone put into words my fears, hopes and feelings. Jane

It is amazing and confusing that radiation continues to "work" as time goes on. My Dad just finished PCI about 5 weeks ago and expects the side effects to last 3 more weeks. So, that is about 2 months of the radiation causing problems! From what I have read, once an area is has had radiation, they don't do that anymore, but, to make this more confusing, the doctor told my Dad if he gets brain mets, they can do the gamma knife to attack the tumor. So much I don't know. Jane

I found the best way to help my Dad was to give him information when he needed it. So, as you take what you read from this forum, know that it is very helpful and meant to be that way. Just yesterday, my Dad quoted something he had read from this forum that had comforted him. He needed to know others in his same situation, since he felt so alone. Please know that everyone is here to help eachother, and it is a wonderful group. Jane

Joni, I am so sorry for your loss and pain. Jane

I am sorry for your loss. You and your husband put up a brave fight. It is a tribute to the man that he was loved so well. Jane

My Dad felt TONS better when he had his neupogen shots. No side effects. Jane

My Dad (Chick) was on carbo/V16 for four series. His "second opinion" oncologist recommended cistoplatin, because it was more aggressive. My father had carbo instead, and didn't have any ear problems -just fatigue and constipation. He is now in complete remission, so it was a successful treatment. Jane

Chick is my Dad's nickname from WWII. He was from a city called Chicopee and went he went into the services at 16 years old, he was given the nickname "Chick" and it stuck. At my parent's 50th wedding anniversary, when we shared this simple story, a funny guy piped up and said "Good thing you didn't come from Assonet!". Jane

Hello, and glad you came back for support. My name is Jane and my Dad has SCLC. Your Dad is young, he can still fight this thing. I wish the doctors would move more quickly since you Dad is in so much pain. I hope your Dad is getting the care he needs, it must be hard for your family to begin to go through this again, and I'm sorry for you. Jane

Boo. Wish they would do what is right. Jane

My Dad (Chick) has been having a real tough time. After his complete remission he took the doctors recommendation and had PCI. He couldn't complete the 20 treatments, he completed the 15. He was awfully dizzy and weak. Though he expected some terrible headaches, he didn't get a one. His appetite isn't great either and he has lost a few pounds. The PCI swelled his brain and caused this imbalance problem. Now 5 weeks later, he is still having the same problems and feeling awful. He will not contact the doctor because the doctor said he could feel the dizziness and fatigue until the end of July. It seems like it has been too long to be this debilitating, that he should be feeling better, and less dizzy, instead of incapacitated for three days in a row (I just got back from spending three days there). Any insights? He isn't on steroids, since he was weaned from predisone right at the start of the PCI. Jane

I'm not able to help you, but I have to say I admire your proactive approach. I hope you find the information you need and are looking for. Jane

It is SO hard to wait for the results. I'm praying for you too. There are so many of us, he has got to be listening. Jane

Jane, it is so hard to grieve for a loved one. The only comfort I can offer you, is that you had someone that you loved so much, and that filled your life with that love. That is more than most people can say. Try hard to remember the good times, the sweet things, the great memories. Sometimes the sickness overshadows such wonderful thoughts. I do believe he is there watching you, and knows. Jane

Boy that makes me angry. That happened to my elderly grandparents - they got the tv and some money. But it never happened again. I have felt safer with my alarm system - though I have to say, I have paniced unnecessarily when it went off for stupid reasons - wind blowing too hard, door slightly ajar. In fact, the darn thing went off so many times the police sent a certified letter demanding I figure out a solution to the repeated calls to their department. They delivered the letter when I hadn't shoveled my front steps and their were full of ice and a danger to anyone trying to climb them so I received a lecture about safety and ice, then asked if I had homeowner's insurance. Yes, that policewoman was mad at us! Then they wanted to charge me for coming on a call (who could blame them?) But now we have it under control, and it is one less thing to cause me anxiety. Rambling, I guess.... Jane

I will pray loud and hard that TBone's pain becomes more bearable and that hospice will be able to go away. Jane

Learn a new thing every day! Glad for the news. Jane

Sometimes don't you feel like yelling "When will this stop!" How much can one family take? I pray for strength for you ALL! A different point - reading posts can teach us so much about compassion, support, and courage. I also learned that a side effect of PCI could be a blocked sinus - who knew? - will be telling Chick. Also, that children WILL eat their vegetables and WILL behave well in hospitals - experiences I haven't been able to achieve with my four! Jane

Dear Julie, Your Mom is receiving a wonderful gift with the support you are able to give her. I believe you are right to be positive with your Mom. She is going through a rough time and needs as much encouragement as you can give. As far as your siblings are concerned, a priest gave me some wise advice one day - everyone has their own "grief map" and deals with hard times differently. Whether it be isolation, group support, fatigue, whether they jump right in to help, or stand back and do a bit, they all have their own way of viewing and reacting to this sickness. Accepting these differences in people is sometimes a great feat, but it can lessen your own anger if you know you are also following your own "map" and what you need and can do is the best thing for you and your Mom. Welcome to this wonderful group. Jane

I love this news! So happy for both of you!

I know you've had a tough time, but I have to say when I read your post, through out the whole thing, I saw tons of support and selflessness and love. What a nice family!

My Dad had an awful cough. Was actually diagnosed with pneumonia for three months before they found the SCLC. He cough has improved greatly since the treatment.

I feel like I say this all the time, but for my Dad, besides the fatigue, he has really complained about constipation. He hadn't expected it, and was miserable! As the treatments went on, he began "preparing" for it by eating prunes, fiber, etc., and eventually got some medicine for it. I don't know if this is common, but it was awful for him.