Alimta and More

[jaminkw]

Guess it's a good thing I'm doing this post. I'm sitting here sobbing as I'm doing it. Talking has always been my way of "getting to" what is really bugging me.

I'm so disappointed in this treatment. My onc assured me "minimal side effects," someone on it successfully for a year now, people on the site echoing "not bad," including me. Now after being wracked with pain from constipation for most of a week after three out of four treatments, I got that right on the fifth. Problem is I have barely been able to function with the fatigue. I have my grandson here and want to help my husband but last night I just sent them off to eat without me so I could just veg (again, still).

Next thing is after spending seven days in two trips to Lazy Days to get the coach worked over, my husband went out yesterday and the outside shell of the drivers side huge window just reinstalled at LD is completely shattered. It's like it was the straw....I'd already been thinking about not going on the September trip while I was still traveling on the earlier trip. It means missing my pj party with my elem school/hs friends but I can't seem to care. There is actually going to be two parties--the small one in which I am included on or around the date the pj party has been held for years, and the larger event held later in Sep. It just happens that will be the Saturday (like today) after an infusion in NJ if I went. I just can't bear the thought of being on the road again in two weeks and having to be at a party a week after my next infusion.

Sorry for being so long winded but I probably kept the most painful for last. My DIL didn't mean to upset me and doesn't even know she did but when we got together she talked about a hs classmate who has had to have hospice come in. She has breast cancer but my DIL said she'd been cancer free for a long while and had looked terrific last year at the reunion. Familiar scenario? We see it all the time. In spite of the fact that there's been good news on the site lately, we still get our share of disappointments. Last night when I responded to Renata, I recalled that fabulous feeling of physical normalcy I felt briefly while off Avastin. I just know that a year into this Alimta with a couple of NEDs under my belt (should I be so lucky), I'd do it again in a heartbeat. Go off the chemo and not go back on until the devil shows itself. It makes me feel like a fraud because when the cancer came back, I'm all about treatment with the onc sugggesting this time I'll stay on it--probably not. If it's going to get me anyway, I want all the good time I can manage.

Thanks for letting me get this out. It hasn't stopped the tears which are still flowing, but I needed to say it ALL.

Judy in Key West

[recce101]

Well, Judy, don't feel like you're the Long Ranger. Though it's not causing me any particular mental/emotional distress right now, my situation is not looking quite as bright as it was a couple of months ago.

First, I agree this Alimta stuff is not all it's cooked up to be. The best I can say for it is that it doesn't affect my taste and digestive system like Taxol and even Tarceva did, so now that I've got the constipation angle under control I'm really enjoying eating and am keeping my weight right on target. Also, it doesn't cause the skin problems that Taxol and Tarceva did. The down side, which has become much more pronounced this past cycle, is the lack of endurance and the shortness of breath with even moderate activity — this in spite of the fact that I'm still doing okay on the spirometer and my lungs are said to sound clear. The last two times I went out for a walk, I turned back before I reached the halfway point of my normal outbound leg, huffing and puffing and even getting some chest discomfort from the very slight uphill climb. In previous cycles my endurance gradually improved the last week of each cycle and I was in pretty good shape in time for the next infusion. But not this time.

The other thing is, my last scan (this week Monday) showed some progression in my "good" (left) lung although the right lung was still stable, so apparently what's starting up in the left lung is resistant to the Alimta/Carbo combination. My onc called me in for a rare Saturday appointment at his downtown office, so we're heading that way in a couple of hours. My guess is that he wants to discuss a treatment change so everything is lined up before I report to my normal clinic for chemo next Tuesday. Also, I've been scheduled for a brain MRI and a bone scan this coming Monday — no symptomatic reasons, just the fact that there's some progression in the lungs and it's been 3 years since either one has been done.

I haven't put any of this in my profile yet since there are too many open questions, but will update it next week.

In my college days one of our stress relievers was to meet in the driveway of our apartment complex and drink "derogatory toasts" to whoever/whatever was bugging us at the time. Maybe I should take that up again. Hang in there, Judy. Much Aloha,

Ned

[ts]

Ned and Judy,

Two of my favorite bright lights on this site. I can only say I wish you well and send electronic hugs.

Stephanie

[jaminkw]

Thanks Stephanie. Ned, this is one instance when misery DOES NOT love company. Thanks for sharing tho. It's hard to admit a treatment sucks when everyone else seems to think it's the cat's meow. I know your philosophy so I know you're ok, but OMG I'm crossing my fingers for you that there is nothing else new. I'll be waiting for your update.

Judy in Key West

[michellep]

I haven't been a member here very long....still the new kid on the block I guess you might say, but each and everyone of you have become my "family". You have always been here to help me when I was hurting and/or needed information.

I find myself with the same tears and feeling your pain as well. I wish I could say the right thing or do something to help you. Well, maybe I can......I promise to pray for all of us to find the strength and courage to fight this battle. We can never give up this fight....never ok? There's power in numbers!!!!!!!!!

[jaminkw]

Thanks Michelle, geez I still love that avatar.

What did I do with all that emotion today. I ran my errands and picked up Lorrene. She's a late seventy-year-old woman (she's not sure how old LOL) who had her drivers license taken away by her doctor and her son. I think it's early Alzheimers. I met her first when I offered to pick her up for the cancer group she used to attend when she still drove. We've become friends. She worries about me and calls me when I'm on the road. I take her to group and out for lunch when I'm able. Today I didn't feel up to much but knowing we both like sweets, we went to a cafe in new town (former Dunkin Donuts) and had a latte and a donut. We sat there for two hours just catching up on our respective family news. It was fun. I took her to find her grandson she couldn't get on the phone so she could ask him to dinner. What a difference in my mood.

Judy in Key West

[ChristinaMarie]

We totally thought Alimta would be a cakewalk compared to Carbo/taxol/avastin but that was so not the case. The fatigue was just getting to be too much even when my husband went to bed at 9:00 every night. Then there was the stomach issues... He didnt feel full blown nausea, but his stomach just doesnt feel right. He just felt yucky all the time instead of just a few days like he did with his first line treatment. He actually told me he was almost glad that there was progression on it so he could switch to something else. Of course we would have liked to get more mileage out of Alimta, it just was not in the cards.

Now he has been on Tarceva for a week. Its great to see his energy come back. Unfortunately the rash has reared its ugly head but that is supposed to be a good thing I guess. It still doesnt keep him from getting flash backs to his acne days though.

[dahknee]

I guess I'd been thinking I was the only one not too happy with the Alimta. Monday is my last treatment though and I'm really looking forward to it being done. That SOB that you spoke of Ned is really kickin my butt. I used to be on 1 litre of oxygen, now it's 3 to 4. I can't walk upstairs without it. I can't play guitar without it anymore. I am just tied to the dang bottle 24/7. I cough and feel nauseous, last night I sat with a can in myt lap for over an hour just waiting to throw up, I didn't but I think I would have felt better if I did. I couldn't get to sleep till midnight then I didn't get up till 1:30 this afternoon. I don't have any energy for anything. I'm just thankful it's almost over for me and I'm praying for my fellows here who are all suffering too. Like was said, there is stregth in numbers. Lets get through it together.

Donny

[recce101]

Things are looking a little better now. The onc, after looking at the images and the detailed report, said what the radiologist was calling increased metastatic activity in the left lung was so minor and subtle that it didn't really qualify to be called progression. So, still stable, and no change in treatment for now. I mentioned the shortness of breath and the fact that many of my Internet friends had complained of the same thing with Alimta, so he's setting me up with my original pulmonologist for a lung function test to see if there's a problem with the way the lungs are processing oxygen. Meanwhile we'll do the MRI and bone scan Monday and the Alimta/Carbo as planned on Tuesday.

Gonna think about something else the rest of today. Aloha,

Ned

[michellep]

Boy am I glad you found a way to cheer yourself up. We all need that from time to time don't we? Today wasn't so good for me either. My husbands adult children from a previous marriage called. "Only" because it's their dad's Birthday. Twice a year...Father's Day and his Birthday. Sad isn't it? What makes it sadder is that they have not even visited him since the diagnosis. My heart just breaks for my husband. They have never even asked about his prognosis, how he's feeling....can they visit...is there anything I can do for you dad .....etc. So........... I'm calming myself the way I usually do....coming here and sending messages to my friends. LOL

Tomorrow will be a better day huh? For ALL of us!

[cat127]

Judy, you are always so upbeat and positive, I think it is perfectly understandable if at some point you just need to break down. I always consider it a bit cathartic. I'm sorry you are having so much trouble with Alimta. When my sister first started with Tarceva, both her doctor and I told her how it was 'fairly well tolerated'. When she ended up in the hospital for 4 days due to the excessive toxicity from it, I felt the need to apologize to her. I felt so horrible that her belief that this would be more easily handled than the carbo/taxol (which she honestly breezed through, so I can only imagine how well she thought she'd handle Tarceva) probably made it all the worse for her. I'm a lot more careful with what I say now.

And just the thought of a donut is cheering me up too! Glad your day got better.

[jaminkw]

First let me say HURRAAAYYY Ned. Enjoy the good news and distract yourself with pleasantries today. Just be sure to keep us posted on those tests when you get the results. I know you'll pass them with flying colors. I'm glad food taste good to you now and just because I forgot to tell you when you posted that pic of you in your office and that new pic of you and Rosie (gee I hope I got the name right) on the beach, the weight you regained looks good on you. I wish I could say the same for me. Anyone notice my pic is still from last Fall LOL.

I'm glad I did this post however morbid it started. It seems to have given others some comfort in their response to their or their loved ones chemo regimes. I must say, however, once I've passed onto day six (which seems to be my turning point day if I get the anti-constipation routine right which I did this time) it's not so bad. I do worry about the warning about the cumulative effect of the fatigue though. I only get the naseau about one day, the fourth usually, but the zofran I have this time works great with just one pill. Donny, I'm so glad for you that you're almost done with chemo. My big problem is their intent to keep me on this forever or until I progress. Then I just go on another poison.

cat and Christina Marie, your posts are classic examples of how different people react differently to the same chemo. I'm terrified of Tarceva and yet know many on this site have had long positive runs on it. Guess I'm vain. I think the rash would prevent me from showing my face in public, and I don't do well in isolation.

Michelle, I'm sorry your husband's children appear so thoughtless and uncaring. I must say it is a little reminiscent of my son and DIL for a long time. Not to that extreme but they were always too busy for us and I would be coming and going for a year or more through Orlando near where they lived and wouldn't hear from them if I didn't call them. Now that her Dad died last year from lung cancer, things are much better. I do feel they have come to face the reality now that their parents are not always going to be here waiting until they have time for us.

Judy in Key West

[Outrider1]

Judy, I am so glad that you found what I call a "simple joy" to help lift you up yesterday. Your are such a shinning light here and just looking at your avatar pic makes me smile, I came back to the page several times to try to say something that would help and just could not find anything within my chemo brain that had either not been said or sounded trite. I did send you healing thoughts and prayers several times yesterday, just as I do all of the wonderful people on this site. I may not write much but I check in daily and think of all of you.

I am so glad that (from your postings today) that today is better for you.

Dawn

[jaminkw]

Thanks Dawn, more simple pleasures today. Alimta has been good to me and I got stuff done. May even get more done after a rest. Got to go with the energy when you have it.

Judy in Key West

[jstdzy]

((((((EVERYBODY)))))))

Dana