Benny boy Posted September 5, 2004 Share Posted September 5, 2004 I don't know if anyone remembers my last post (well over a month ago), but I wanted to update my mom's, and my own situation, just to get a little feedback. First, my mom was diagnosed July 11 with nsclc and cancer in her fluid (IIIB). After a subsequent mri and pet scan, we found out that she has brain mets and no sign of bone mets, even though the drs were sure she had it in her bones (yay). Anyway, she's been doing carbo-taxol chemo since the first week after diagnosis, she's on iressa, zometa, and other stuff, just finished whole brain radiation, and is not scheduled for any more tests for the next few weeks. Some good things. Her hair was getting thinner, and when it got thin enough that she was afraid it was going to fall out, she decided to go ahead and shave it. Turns out she has a full head of stuble! She never lost her hair, that scares some people in my family, because they think that means the chemo isn't working. I am not a doctor or a fortune-teller, so I don't try to figure it out. On that note, she has one of those good bald heads, so we all joke about how maybe it can just be her new look. The other good thing is that I happen to be good friends with a lot of sons of doctors. My best friend's dad happens to be the head of stereotactic radio surgery at overlook hospital in new jersey, and he's the only guy for hundreds of miles that uses "cyber-knife", which I guess means he won't have to screw the brace onto her head. He's also calling his "boy's" for advice at Mass General and Sloan, just to make my mom feel better, (even though he tells me that it's not really necessary). Bad things. She now gets tired quicker than a cat on quaaludes. She'll anounce to everyone that she's tired, and we'll turn our head to look at the couch and she's passed out. I don't know how frightened I am by that, but I do hear my dad always talking about how quickly things can deteriorate. So I guess if I had a question it would be something like this: I never look at the statistics, because I don't see the sense in bracing myself for something that will happen anyway. All I ever know is that my mom will be alive tomorrow and she will be alive next wednesday, and beyond that isn't worth my time guessing. However, with people telling me that she could start going downhill so fast, should I be preparing myself for the possibility of her not being here "next wednesday"? I'm not in denial about the cancer, it's just that everyone else has turned it into a life consuming spectre. I'm still here hanging out with my mom, what's the sense of me looking at her on the couch and putting her foot in a grave? I'll treat her as a person with cancer in situations that call for it, but not when people feel like we need to be solemn. Thanks for getting all the way through this. Oh yeah, I think my dad is starting to drink (hiding it, innappropriate times, more than normal), for obvious reasons. I can't tell my mom about this, despite what I just said about treating her normally. Anyone ever have a similar situation? Quote Link to comment Share on other sites More sharing options...
Roseymac Posted September 5, 2004 Share Posted September 5, 2004 Hi Ben, Glad you came back. You have so many resources for your Mom that is great, nice to have friends that are Doc's. The chemo and radiation are probablly what is making your Mom so tired, I know the WBR alone causes extrme fatigue. The fact she was also having chemo doubles the fatigue. The Chemo and radiation kill the fast growing cells, good along with the bad, the red cells, white cells, and platletts. Red cells and platletts that are down make you real tired, and sometimes short of breath. (Now the Hair Thing) I had heard the same thing about losing the hair, it is just that some people are differant and only get thining. My husband was like that also, it looked as if it was really coming out a lot and we shaved it and he had a thick head of stubble also, now he is on 2nd line chemo and he hasn't lost any at all. It really hasn't grown much but it is not thinning, he keeps saying it is on hold. Rosemary Quote Link to comment Share on other sites More sharing options...
patut Posted September 5, 2004 Share Posted September 5, 2004 Funny, my son just arrived at the same conclusion as you yesterday about his father and now he feels so much better. Sometimes our friends who mean well cause us to think in a manner that causes us unncessary low feelings. Thank God for this board! Cyndy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 5, 2004 Share Posted September 5, 2004 Hi Ben, It is very common for chemo and radiation to cause fatigue like this. It did it to my husband in a big way. He was off work for two months last fall and slept nearly 24/7. He is a very strong man and had absolutely no physical problems, other than headaches, prior to treatment. The treatments just drained him. After a couple of months, the onc put him on a low dose of decadron to "kick start" him and it worked. As far as the hair is concerned, we were told that his hair WOULD fall out from the WBR, and it did - about the 8th treatment, and as far as I know, I think most everyone loses their hair from WBR. Perhaps your mom was getting a lower dose of radiation. Also, I don't think that hair always falls out from chemo, but I could be wrong about that. I hope your mom gets to feeling better soon, but please tell your family that this kind of fatigue is normal. Unfortunately, chemo is poison, and therefore, it kills some good things while it kills the cancer. The good news is that it almost always gets a lot better. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 5, 2004 Share Posted September 5, 2004 Hi Ben- I'm 37 and I can tell you that chemo and radiation made me tired, everyday when I got home from treatment I would pass out on the couch, I can imagine that your mother is a little older then me and I would expect her fatigue to be greater based on her age. Although we can't say that she will be here next wednesday, none of us may be. I would look at things this way....she has cancer....be prepared for everything and anything! I tell my children everynight before they go to bed how wonderful they are, how much I love them and how happy they have made my life (since diagnisis). Don't leave anything unsaid! Aside from cancer ANYTHING else could happen and make our lives short. Cancer just makes you more aware that there is an end to life. Good luck! Quote Link to comment Share on other sites More sharing options...
Laurie Posted September 5, 2004 Share Posted September 5, 2004 Hi Ben, First of all I wanted to say that I'm sorry that your Mom has LC and it sure is an overwhelming and scarey thing to watch your Mom change and go through treatments. My Mom slept alot too and it is the best thing for her. I like to think that when she is sleeping she is Healing. Those bad cells are being destroyed and she needs to sleep to allow that process to take place. My Moms hair fell out in thin strands she had a Annie Lenox style hair cut I can't remember the name of that style but the longer style came out and bothered her eyes. Fell into them while she slept. Make sure you take some time for yourself and try to stay positive if you can, there is always hope and while our loved ones choose to fight this battle we can only encourage them, and have faith that the doctors and the Lord will bring them to a path of healing. When you are scared or angry just come here and get it all out. We can support you and we have felt many of the same fears. Many people here can give you help with symptoms and tell you what they experienced. You are not alone, keep posting and I will keep you and your Mom in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Andrea Posted September 5, 2004 Share Posted September 5, 2004 Ben, Glad you came back. As everyone said the treatment can make you sooo fatigued! Also, my mom;s chemo worked and she did not lose her hair It thinned but taht was it Quote Link to comment Share on other sites More sharing options...
paddy Posted September 7, 2004 Share Posted September 7, 2004 Ben, My husband was very fatigued from the first round of chemo but later picked up again. It has not been the same with the latest chemo unfortunately. It is infuriating when people start getting negative around you isn't it. I wouldn't let them scare you, just appreciate your Mom as much as you can every day and if she feels well enough to go out, take her on a drive for a change of scene .You seem to be a very caring person and your Mom is very lucky to have you. Paddy Quote Link to comment Share on other sites More sharing options...
Nushka Posted September 7, 2004 Share Posted September 7, 2004 Glad you came back. Your mom sounds like a really nice person and I am sure you are a great son. Like Paddy said, just appreciate her each day and spend as much quality time with her as possible. I was exhausted after chemo and radiation, so I know that is a normal reaction. As for the hair loss, mine started falling out...I shaved it and had alot of stubble for a few weeks...then it went slick. I now have lots and lots of hair (more than before) and it is curly. It came back the same color as before and I am so proud to have it. I loved the way you said she has one of those "good heads"...perfect description. I was not that fortunate. Nina Quote Link to comment Share on other sites More sharing options...
jean44 Posted September 7, 2004 Share Posted September 7, 2004 Hi Ben, So sorry to hear about your Mom. We lost my Dad to lung cancer with mets to the brain last Fall after an 11 month battle. My Dad had the stereotactic radiation procedure in Cincinnati for the brain mets (he DID have the halo bolted on his head). By the time the procedure was done he had 16 small tumors with 2 of them bleeding and it was not able to help. After this we were sent home with the advice of the doctor to contact hospice. We had high hopes for the stereotactic radiation. Maybe because the doctor had said this was our last shot. Will keep your Mom, your family, and you in my prayers. God Bless and good luck! Jean Quote Link to comment Share on other sites More sharing options...
berisa Posted September 8, 2004 Share Posted September 8, 2004 Yes, fatigue is common. Don't think too much. This is not that worst. You will know the time is coming. Try to treasure every second you both have. Don't think too much. Quote Link to comment Share on other sites More sharing options...
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