Help! (Long post sorry)

[Leslie]

All--

I desperately need your collective wisdom. As many of you know, my dad was diagnosed in April with Stage IV. He was on Carboplatin/Gemzar/Avastin. After three rounds, it was found that the cancer had progressed and there were new mets on the ribs, femur, and spine and a small met on the liver. (There was some shrinkage in the lungs.)

Two weeks ago, my dad had his first infusion of Alimta/Avastin. He was okay for the first week and managed to do some activity. However, he has developed a terrible, terrible cough and for the past week, he has had horrible fatigue. He can barely get out of bed in the morning. He keeps his eyes closed for most of the time when he talks. He says that he is feeling terrible.

At the moment, he is on antibiotic for the cough. He takes some medication to prevent acid reflux. At various points (e.g. before and after chemo), he takes decadron and he recently tokk predisnone for three days (but he finished the dosage yesterday--so he will go back to decadron). He has also been taking hydrocodone continuously (almost since diagnosis) for the cough.

His doctor says that his T3 count is a little low but doesn't think that is the problem.

Can anyone give us some thoughts on what we can do to relieve the fatigue? We are getting very scared that he is so weak and feels so terrible. Our onc. says he will cancel chemo tomorrow if the fatigue doesn't improve.

Thank you in advance for your help. We are scared.

Leslie

[raneyf]

I don't have any great suggestions - I'm assuming he's not anemic. I've heard people say a "little" exercise helps sometimes, but I don't know if that's feasible. Maybe just a walk around the house or something. Are they trying to take him off the steroids and tapering him? Maybe that's contributing? Is he eating well? Just brainstorming, sorry not more helpful.

[fillise]

Leslie--I don't have any suggestions, just wanted you to know that I'm thinking about you and your dad.

Susan

[Ry]

Leslie- I would bet my house it is the Alimta. John had a bad time with Alimta and extreme fatigue --it did work, but it was very hard on him.

[Leslie]

Hi--

Raney--Thanks for those great thoughts. He had his counts tested two days ago. Red blood cell count looked good. White blood cell count was a little low--but likely caused by the steroids. He does seem to improve, as you suggested, when he moves a little bit (e.g. gets dressed and walks to the car). However, he is very resistant to any activity right now. And today, he can barely get dressed...Please keep the brainstorms coming. We are at a loss too.

Susan--Many, many thanks for your support.

Leslie

[RandyW]

HAs he had his potassium levels checked. B-12 shots are administered with this combo if My memory serves me right. Maybe adding in some Banana smoothies. THat would supplement the potassium. Just a thought from my 1 experience with combo..

[J.C.]

Your father had Zometa and one

side affect is all the signs od

a cold and fatigue after, that was

my experience with Mike when they

gave him Zometa.........it clears

but it is also hard on the kidney,

so lot and lot of water.

Jackie

[Leslie]

Hi all--

Ry & Jackie--Thanks for sharing your experiences. I remember hearing that Alimta could be tough...and that Zometa can cause pain...

Randy--He got a B12 shot last time--but apparently, they can only do it once a month so he won't get it this time. I will ask the onc. about the potassium.

It looks like chemo is going to be cancelled today to see if my dad can get a little strength. We are starting to focus on the fact that he showed signs of hypothyroidism (low T3 counts).

Has anyone had experience with slight hypothyroidism causing extremem fatigue?

Thank you so much for all of your help.

Best,

Leslie

[Don M]

I had alimta and had fatigue. I think at least a little bit of exerise would help even if it is just walking around the house. I went for a walk in the morning and crashed in the afternoon when I was on alimta. I never really recovered much by the next infusion until near the end of my treatment.

Don M

[Welthy]

Leslie,

Have they checked his blood oxygen levels? Alimta can irritate the lungs and cause all kinds of funky things to happen. Extreme fatigue is one of them. Coughing and SOB are also possible. The B12 shots are only given once every nine weeks. He is taking 400-1000 mcg of folic acid daiy too, right? The cumlative effects of hydrocodone every day can make him groggy and tired too. Random thoughts, not much help.

Although Tony has been off Alimta for two months, he never has fully recovered from that regimen. After his fifth treatment, we were going to pull the curtain on it regardless of whether it was working or not. For some, Alimta is a very tough treatment.

I'm sorry this is happening and hope for a full turnaround in his condition soon. Is there a particular reason he's on steroids? I think I've heard that those can cause problems after being on them for awhile.

Hugs,

Debi

[recce101]

Leslie:

I don't have any personal experience to share on the possibilities already mentioned, but certainly think they should be investigated. From your dad's reaction to the Ativan several weeks ago, I'd say he might be unusually susceptible to medication side effects in general.

I don't know why that's the case with some people -- my wife is the same way, quick and rather strong reactions to tiny amounts of some medications and food additives, and she's a pretty tough gal otherwise.

Wishing you the best. Aloha,

Ned

[Adrian]

our best theory at the moment, which we will have more info on this afternoon, is that dad's massive and continuing weakness and fatigue is the result of mild hypothyroidism.

His labs this week showed that one of the two thyroid hormones (T3) was out of the normal range on the low end (but not by much). Our research indicates that even mild hypothyroidism can be symptomatic and that a T# medication can resolve the issues rapidly.

Given the labs, its our best theory for now, just hoping that the onc and endocronologist who was consulted feel the same way.

[RandyW]

Yeah I have the Hypothyroid problem and take levoxyl for it. When i was diagnosed I could almost fall asleep at work. Iwork in a restaurant so I am always doing physical stuff. How is memory is he kind of forgetfull? There again the Hypothyroidism. Good Luck. I use levoxyl or you can ask about Synthroid also for Hypothyroidism.

[VegasMomOf3]

Hi there!

Is your dad on oxygen??

Be Blessed,

Donna

[Leslie]

Ned, Welthy, Don, VegasMomof 3, Randy, Ry, Susan, Jackie (I hope I didn't miss anyone)--

Thanks for all of your thoughts. My dad saw his onc. yesterday and--it looks like it is not the thyroid causing the trouble. He is just really getting hit hard by the Alimta. (As you noted Ned, he seems to just be one of those people that really gets hit hard by certain medications...)

We have asked the doctor for a prescription for Provigel and we are hoping that brings some relief for the fatigue. We had a bit of a scare yesterday--as my dad passed out and fell on his way into the oncologist office. However, he had an MRI and the results show that he is stable. (Finally, some good news during this incredibly hard week.)

He is not on oxygen as he has not had shortness of breath and his red blood cell count is okay.

Thanks for sharing your experiences. We have delayed chemo this week and are hoping he is better and ready to go for chemo next Friday.

Wishing you all the very best,

Leslie

[fillise]

Leslie--thanks goodness that your Dad is stable, but what a scare with him passing out. Hopefully he can have an extra week and get a little stronger before his next chemo. I'm hoping that the effects the drugs are having on his is also the effect they are having on his cancer!!!!

Susan