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Thanks everyone. I'm calling the doctor as soon as they're in this morning. We decided that the dosage is definitely too much. Yesterday was awful. We weren't sure whether he should even take it last night, but he did. I looked it up online and noticed that it comes in 15mg, and now I'm wondering why they didn't start him on that initially. Lately, every medical solution for one problem brings with it another set of problems. And the one problem that never goes away is the inability to eat well. I was so overwhelmed with it all last night, I just lost it. It's so unfair. But you all know that feeling. Thanks for all your info and thoughts, Dar. I hope your mom is starting to feel better. Everytime I look at her picture, I think of my own mom. They have a similar look. Bill is over the effects of the radiation, although he definetly suffered from it. The brain radiation effects didn't really hit him (the tiredness) until he was done with the treatment. Unfortunately, this pain is cancer-related. He has a few places in his body in addition to his lung that are affected. He's also extremely weak and under-nourished. I am hoping that once they radiate his back, at least one source of pain will be gone and maybe he won't need the strong stuff.

Hi Cindy, I'm sorry to hear about how rough things are getting. I can relate to some of what you're talking about, although to a lesser degree -- the constant vigilance and fear of something happening (like a fall). No great words of wisdom except to stay strong and accept help wherever you can. And to know that what you're doing right now will be one of the most important things you do in your life. Just this morning Bill looked at me and said, "I really don't know how you're coping with all this." I replied, "I really don't know how you're coping with all this either." Simple truths -- but it's agony on both sides (although I know his is much worse, even if he disagrees with me). I'm sure your hubby appreciates all you're doing for him even if he's unable to express it. One practical thing. You may already be doing this. About his memory and the meds. For MY memory and because we keep getting new and different meds, I keep a chart of when each med is taken and how much is needed each day. If you can show that to him, it might ease his mind to know he hasn't missed one. Take care -- I'll be thinking of you,

Bill has been on the MS Contin-CR (30 mg) since Thursday night. He's having EXTREME fatigue. Literally I have to keep waking him up if he's trying to eat or drink something. That along with his general weakness from not eating is making him quite unstable as he's walking around. My question is: How tired is TOO tired, and how long does the initial adjustment period typically last? We see our medical onc on Tuesday, so I figure that's enough time to know if this med is too strong. Any similar experiences? Is there ever an easy answer?!

Hi Bobby, Bill didn't have PCI, but when he did the whole brain radiation, I don't recall him having any headaches. If he did, they weren't bad enough to comment on. Did she tell the doctor yesterday? Hugs,

Sheri, That's great news -- wishing your dad a successful treatment and speedy recovery.

Celebrate each and every milestone, Jamie. Congrats to you!!!

Liz, I am so sorry to hear this. What you just described has been Bill's biggest fear. It still is. You so don't deserve this. GinnyB gave some invaluable information and I hope this helps you get what you deserve. I recently took 30 days of the FMLA (all I was eligible for because I just started). I noticed in the paperwork that it includes the person who is ill as well, not just the person caring for them. I don't know how much time you can get, but I think if you've been with the company over five years, you can get quite a bit. You'll be in my prayers, Liz. I'm glad you're going to fight it because I think you'll win. Hugs,

Hi everyone, Well our doc appointment actually went well, all things considered. Bill is now on MS Contin-CR every 12 hours for long acting pain control, and is using Dilaudid for breakthrough pain control. It's working! Trouble is, he's struggling to stay awake. He literally falls asleep in the chair when we're talking sometimes (maybe it's my conversation ). But from what I've read, that's normal when you first start on these type of meds. Hoping the fatigue subsides somewhat. But if he has to choose between fatique and pain, he'll choose fatigue. The first night he took it and the pain went away, he said he had to get out of bed so he didn't miss not having pain. He didn't want to sleep through it! He was so happy the following morning. It was also the first night in a long time that he virtually slept through the night (which meant I did too!). He is also scheduled to start more radiation on a spot on his back that is one great source of pain. Perhaps after that he won't need as many meds, but we'll just have to see. Now if we can get some weight on him, things would look up. At the moment he looks like he's been on a hunger strike. Love to everyone,

Ernie, Thank you from both of us -- that was very touching and means a lot. And I should add that I will certainly be holding you all up in prayer too. Hopefully you'll be hearing from Bill a little later. With love, Teri & Bill xoxoxo

We now have Ketoconazole tablets. Bill started those on Thursday evening. Tongue still looks the same this morning. I'm hoping and praying this works and doesn't take weeks. He can't afford to lose another pound. Saw our radio-onc on Friday. At least he was concerned and sympathetic about the eating and gave us a bunch of samples of mixes and powders meant to help build body mass. Told us he has his pager and to call anytime if we need him over the weekend. Our medical onc just says, "Bill, you need to eat." Well duh. Thanks for all your help.

Once again, the advice here is invaluable. You've all given me a lot of things to look into, and to just know that there are more options that we might have thought. I guess it's a matter of finding the right combo for each person. Thank you, thank you, thank you. Bill felt a tad better earlier -- I could tell, because his sense of humor returned in full force. He was walking around saying, "I'm not in pain and I'm not tired, I'm not in pain and I'm not tired..." Followed by, "that mind over matter [bleep] is a load of [bleep]." Like a lot of you, he doesn't want to be "out of it." But he wants to be comfortable. Hoping there's a happy medium. Hugs to all,

Hi everyone, Up until the past few days, Bill's pain has been at least somewhat intermittent. When he's having it, it's bad -- but there were periods of relief or at least lessening of pain where it was more of a discomfort. He's had Vicodin (almost does nothing now) and recently Dilaudid. He was given dilaudid in the hospital (intravenously) and it worked well, so we asked the doctor for the pill form. It worked great the first 4 or 5 times. Now it just lasts a very short time. He was only using it at night, so it's not like he's been taking it all day to build a tolerance. He's been in agony nearly 24 hours. We see the doc today. Obviously, I'm going to explain the situation and pain the best I can. But I'm wondering if anyone has any advice about pain management. I know I've said this before, but Bill has a very high tolerance for pain, so when he's doubled over in agony, I know it's bad. He mentioned having someone come in. I believe I'm right that a "hospice" only comes in when you've stopped treatment? Has anyone else had nurses come in strictly for pain management while still undergoing treatment? Who would I talk to besides or in addition to our doctors? Bill's not on treatment right now, but is wanting to start more chemo when his body is strong enough. He said if it's a choice between pain and having to the hospital, he'll suffer the pain. I don't believe that should be a choice he has to make. Sorry if this is too long...thanks for any info.

Well, the bigger and better thing our doctor prescribed ended up being an over-the-counter mouth ulcer "temporary" pain reliever! I was so frustrated yesterday. I quickly drove to the doctor's office to pick up the new prescription (didn't trust them to get it to the pharmacy!), then went to get it filled. When I saw what it was, my heart sank and I almost burst out in tears (not like me). (Of course by this time, the office is at lunch so no one to complain to.) I called back in the afternoon again to say that mouth pain wasn't the problem -- the problem was that the fungus wasn't going away and the taste of it made it almost impossible for Bill to swallow food without feeling sick. We never got a call back. And this is the doctor lecturing him about his weight loss. He's going through so much physical agony at the moment, seeing him go through just one more unnecessary thing is breaking my heart. We see the doctor again tomorrow anyway, but sometimes I feel like he's great with cancer, but crap with "quality of life" issues. With all that Bill's going through now, I think a phone call just asking what the problem was wasn't too much to ask for. On the plus side, I did take the great advice of Karen to get it flavored. Just wish I would have done it sooner. It's a bit more tolerable now. Vent over. Happy 4th!

Thanks everyone for the info and experience. After four days, it's better but still there. I'm going to call the doc today and see if he can give Bill something bigger and better. The taste of it in his mouth is making him not eat. It's not bad enough that it's caused pain this time because we caught it early, but he says everything tastes like motor oil. So....he's losing weight again. It's a crazy cycle. As if he's not dealing with enough. The real frustration is that he's hungry and wants to eat. And keeps trying to eat, but then the food taste makes him feel sick. We have our family and a couple friends coming over for the 4th, and I want Bill be actually be able to enjoy a burger! Hugs to you all and best wishes for a happy 4th.

I would agree with Connie to please call your doctor right away. If it is brain mets, you want to be able to start treatment right away. Hugs,

Now that Bill just started to put weight on, his thrush in the mouth is back (probably due to low WBC). This time they've given him a liquid medicine called Nystatin. Last time, which was just over a couple weeks ago, he had antibiotics which knocked it out quickly. He started using this Nystatin yesterday. (Why do they make medicine for ill people taste so horrible?)Don't really see an improvement yet -- has anyone had experience with this to know how long it takes to work? He's convinced it's not going to work, but I keep telling him it will probably take a couple days. As usual, he's hanging in there and despite all the physical stuff, has been in very good spirits.

Nova, If he's having such an awful time with it, it does make sense to give his body a break. If you feel at all uneasy about the decision, I would certainly agree with Ernie to get a second opinion. With all he's gone through and is still going through, it's hard to imagine giving him more of the chemo that's causing him such difficulties. Read through Deb's profile (dchurchi) and you'll see that her Alan couldn't tolerate chemo either and had a terrible time, but still achieved remission. That might give Harry some comfort to know about. I know this must be terribly difficult on you both. Please know I'm thinking of you and keeping you both in my prayers. Hugs,

Hi Deb, I love seeing the new pics of your family. So pleased that your dad is doing so well and that you can give a lot of people hope with his great story. Parasailing is fantastic -- you must do it!!!

I'm sorry to hear about your mom's news. I know with my hubby, he didn't really like to talk to the kids right after receiving bad news. He didn't want any of his emotion to come over to them on the phone, because of the distance. It was a protection of them and of him I suppose. Perhaps that's what your mom is going through right now. Maybe she just needs to come to terms with the news, then get back in her fighting spirit before she talks with you. I would take it as a sign of her love for you, and nothing negative. I think there are plenty of people here who have had successful treatment of bone mets. Stay strong and keep you hopes high.

Hi Rhonda, My husband also suffers from the double-vision. He finished his brain radiation. It's still there, but he seems to be able to deal with it better now than at first. (Our doctor recommended wearing an eye patch -- he does it occasionally and it does help a little). He's still a little unsteady, but that's improving as he puts weight on. I noticed that as the Decadron was reduced (he's now off it), that many of the personality symptoms went away and he's now himself again. Whereas the steroid definitely caused some personality changes, particularly the first week. My view is this. As long as he can feel better today than he did yesterday, there is hope that he'll feel better tomorrow than he did today. That's how I hold my hope. Hoping your mom gets better and better...

Hi Laurie, I'm so sorry to hear about your Bill's low blood counts and the chemo being postponed. We went through that with the last three cycles of my Bill's initial chemo treatment (carbo/etoposide). I'm convinced that the Neupogen the insurance would pay for didn't work as well on him as the Neulasta they didn't want to pay for. He had the Neulasta twice (the first and last times he needed the shot), and both times his blood counts stayed elevated. With the Neupogen, however, his blood counts would rise sharply, then fall right about the time we were scheduled to start chemo again. I so understand your frustration. Have you tried Dr. West? Thinking of you guys... Hugs,

Sheri, That's fantastic news -- prayers for a successful treatment. Thank goodness you were all so proactive. It's a good lesson for all.

Nova, I am so sorry to hear all that Harry has been through (I just saw your post today). The web site is not just for giving support, it's for getting it and you should never apologize for needing it. I so understand the helpless feeling and how horrible it is to watch your husband's body basically turn against him. It's excruciating and sometimes you have to give in to the despair in order to gain your strength back. I'll be praying for you and Harry tonight that those antibiotics do the trick and surgery isn't needed.

Tina, I'm so sorry to hear your news. We're all believing in miracles here...

Hi Nova, I don't have anything additional to share -- just hoping and sending up prayers that Harry feels better soon. Hugs,